Caregiver Time Research Articles

Using formative research to design context-specific animal source food and multiple micronutrient powder interventions to improve the consumption of micronutrients by infants and young children in Tanzania, Kenya, Bangladesh and Pakistan.

Optimal complementary feeding practices including consumption of multiple micronutrient powders (MNP) are recommended to improve micronutrient intake by infants and young children (IYC) 6–23 months. Formative research was used to design the behaviour change strategy to improve IYC micronutrient intake for the multicountry ENRICH project in rural impoverished areas of Tanzania, Kenya, Bangladesh and Pakistan. Employing a qualitative approach with multiple methods and guided by a social ecological framework, the study was conducted in several phases: data collection in the community, household and health facilities, initial analysis and household trials (HHT). Results found limited use of animal source foods (ASF) for feeding IYC and MNP largely unavailable. Although cost constrained access to ASF, potential more affordable context‐specific ASF options were identified in each setting. Caregivers associated ASF with many positive attributes for IYC, but barriers to feeding them included lack of caregiver time and knowledge of specific preparation techniques, and limited advice from health workers. Feeding practices were identified that used time‐efficient, specific preparations for eggs and other ASF, and demonstrated good initial acceptability and feasibility during HHT. Testing MNP in HHT found good initial feasibility and acceptability and provided an understanding of the facilitators and constraints for preparing, feeding and promoting MNP. In conclusion, formative research led to the design of context‐specific ASF and MNP complementary feeding promotion strategies to improve IYC consumption of micronutrients by identifying the practices, benefits, motivations and alternative actions to overcome the barriers in each setting.

Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary

PurposeThe CarerQol instrument has been designed and validated as an instrument able to measure both the positive and the negative impacts of caregiving on the quality of life of informal caregivers (CarerQol-7D), as well as their general happiness (CarerQol-VAS). The aim of this study was to assess the construct validity of the CarerQol in the Hungarian context.MethodsThe CarerQol was translated into Hungarian. Subsequently, in a cross-sectional online survey, representative for the general Hungarian population (N = 1000), informal caregivers were identified (N = 149, female 51.2%, mean age 53.2). Clinical, convergent and discriminant validity of the CarerQol were evaluated in relation to the caregivers’ and care recipients’ EQ-5D-5L health status, and caregiving situation characteristics.ResultsAverage CarerQol-7D and CarerQol-VAS scores were 76.0 (SD 16.2) and 6.8 (SD 2.3), respectively. CarerQol-7D and CarerQol-VAS scores were significantly correlated with caregiving time (r = − 0.257; − 0.212), caregivers’ EQ-5D-5L scores (r = 0.453; 0.326) and the CarerQol-7D also with care recipients’ EQ-5D-5L scores (r = 0.247). CarerQol-7D scores differed significantly with relevant caregiving characteristics (e.g. nature and severity of care recipients’ health status, sharing household) and both the CarerQol-7D and CarerQol-VAS with the overall care experience.ConclusionOur findings confirmed the validity of the Hungarian language version of the CarerQol and support the cross-cultural validity of the instrument. CarerQol-7D scores performed better in distinguishing caregiving situation characteristics than the general happiness measure CarerQol-VAS. Care recipients’ health status was only weakly associated with informal caregivers’ care-related quality of life and happiness. Caregivers’ own health and caregiving circumstances were more strongly associated with these scores.

Emotional responses of parents participating for the first time in caregiving for their baby in a neonatal unit.

Parents of term and preterm infants hospitalised at birth experience a stressful situation. They are considered as primary caregivers in neonatal units and are encouraged to participate in their child's care. The aim of our study was to analyse the feelings of parents participating for the first time in caregiving for their baby admitted at birth in a neonatal unit in France and to compare the feelings reported by parents of term and preterm infants. An online survey was created in 2014 for parents who had a baby hospitalised at birth. We analysed parents' responses to this open-ended question: "How did you feel when you participated in caregiving for your baby for the first time?" using a qualitative discourse analysis by two analysts. Themes were identified and coded. Between February 2014 and March 2018, 1603 parents of preterm infants and 239 parents of term infants responded to this open-ended question. Twenty-five per cent of parents expressed positive feelings exclusively (confidence, ease, joy, pride, feeling supported by healthcare professionals, by their family and feeling of being a parent), 41% expressed negative feelings exclusively (stress, fear, feeling of being judged, frustration, anger, uselessness and clumsiness) and 34% expressed mixed feelings (both positive and negative). Parents of term infants expressed less frequent feelings of stress and fear than parents of preterm infants: with a relative risk (RR) of 0.69, 95% confidence interval (CI) 0.56, 0.87. Parents of term babies more frequently expressed feelings of frustration: RR 2.40 (95% CI 1.33, 4.32). Infant- and Family-Centred Developmental Care supportive programmes are recommended within neonatal units in order to improve the experience of parents participating in caregiving for their baby hospitalised at birth.

Informal Elderly Caregiving and Time Spent on Leisure: Evidence from Time Use Survey

This paper examines the risk of time poverty defined as leisure participation among informal caregivers of adults and older people. We draw on the most recent time use survey conducted in Poland, which incorporated more than 28,000 households in 2013. We assess the extent to which caregivers are more likely to experience shortages of time spent on physical activity, hobbies, and social life. Additional information about respondents’ time preferences allows us to examine not only the objective and relative time deficits of caregivers, but also the subjective and expressed ones. We distinguish between co-resident caregivers and those living outside the household of care recipients, simultaneously accounting for the differences between male and female caregivers, as well as care provided during working days (Monday-Friday), and that provided on weekends (Saturday-Sunday). Our results indicate that caregivers for adults are in general more likely to allocate less time to physical activity, hobbies, and their social lives. This effect, however, is observed primarily among co-resident caregivers, both male and female. The leisure time of caregivers is more noticeably affected during weekends than on working days. Concurrently, caregivers are more likely to admit that they wish to spend more time on different forms of leisure activity. This confirms the hypothesis of a trade-off between time allocated to elderly care and that allocated to self-care, which can be detrimental to the health, life satisfaction, and wellbeing of informal caregivers.

Caregiver Burden Among Primary Family Caregivers of Patients Undergoing Hematopoietic Stem Cell Transplantation: A Cross-sectional Study From Suzhou, China.

Patients undergoing hematopoietic stem cell transplantation (HSCT) require extensive care, and their caregivers were previously found to experience high levels of caregiver's burden. However, the current status of HSCT patient caregiver burden in Suzhou, China, is still unknown. To investigate the current status of caregiver burden among family caregivers of HSCT patients from Suzhou, China, and explore the related factors of caregiver burden. This cross-sectional study enrolled 116 HSCT patient-caregiver dyads. The following measurement tools were used: a demographic questionnaire, Zarit Burden Interview, and World Health Organization Quality of Life questionnaire (brief version). Multiple regression model was used to analyze the factors associated with caregiver burden, and the relationship between caregiver burden and quality of life was analyzed. Caregivers' marital status, family monthly income, duration of caregiving, daily caregiving time, other cocaregivers, transplant-related complications, and relapse were closely related to caregiver burden, and 75.4% of the variance in caregivers' burden was explained by these factors. A negative correlation between caregiver burden and quality of life was noted. The HSCT patient caregivers' burden noted in this study was higher than that found in previous studies. The quality of life of HSCT patient caregivers is lower than that of the average Chinese population and decreases with a greater sense of burden. Hematopoietic stem cell transplantation patient caregivers should be given appropriate social support to reduce their burden of care. Factors identified in this study may help center future intervention programs on caregivers who need help the most.

Custos Associados à Prestação Informal de Cuidados a Pessoas com Demência

From a perspective that considers the costs borne by the informal caregiver and the care-recipient, this study quantifies and values the use of health and social services, and the time dedicated to caregiving in dementia situations. Sociodemographic information and use of services was obtained from 123 caregiving dyads. Costs with informal care were evaluated and valued considering the Health Sector (health services), Patient/Family Sector (time of caregiving) and Other Sectors (social services, continuous care, other private services). Costs with health and social services considered the paying person; the Patient/Family Sector was valued through the proxy-good method. The costs were calculated per month and the value for 100 dyads. The total cost of informal care was €61 982.2/month per 100 dyads. The Patient/Family Sector value (€44 030.0/month) contributed with 71.0% of the total costs, Other Sectors with 20.8% (€12 887.4/month), and the Health Sector with 8.2% (€5064.8/month). The obtained value per dyad (€619.8/month) represents 77.5% of their monthly income (median = €800.0; interquartile range = 679.0), which can limit the decision of continuing the care provision at home. Considering the values presented for this specific sample, it is estimated that the exemption of fees in the Health Sector and/or benefits in social services may contribute to a downward estimate of the costs. Regardless of the complexity in estimating the costs associated with informal caregiving in dementia, this paper provides some insights on the burden they can represent for the family income.

Démocratie sanitaire : le patient partenaire de sa prise en charge

In 2019, the scientific committee of the French society of radiation oncology (SFRO) created an ethics committee. Its mission is to provide our professional community with food for thought on ethical issues, and to identify its specificities within the radiation oncology departments. For the 2020 annual conference, the commission looked into the evolution of the patient-carer relationship, and more particularly to the strong idea of patient partnership. Indeed, the writing of the White Book of Cancer gave voice to sick people and stressed the need for new devices, such as the Caregiving Time. Patients can no longer be considered as objects of care but as people whose dignity and autonomy must be imperatively respected. The acquisition of knowledge allows a bilateral exchange, prerequisite of a dynamic collaboration. Patients can be partners in their own care, partners in training and research (expert patient), but also partners in health institutions and policies. It is this notion of partnership and involvement of the person in their path of care in radiation oncology that we will analyse here. It will be about defining it, by developing the concept of autonomy, and bringing out its complexity and ambivalence through two examples from our clinical practice: the shared decision-making process for patients with localized prostate cancer and the patient's involvement in the success of his radiotherapy.

Expenditure and Financial Burden for Stomach Cancer Diagnosis and Treatment in China: A Multicenter Study.

Background: Stomach cancer is a huge threat to the health of Chinese people. However, few studies have looked into the expenditure and financial burden due to stomach cancer in China.Methods: To estimate the direct (medical and non-medical) and indirect expenditure for diagnosis and treatment for stomach cancer patients in China, a multicenter survey was conducted in 37 tertiary hospitals in 13 provinces across China from 2012 to 2014. Each enrolled patient was interviewed through a structured questionnaire. The medical and non-medical expenditure at different clinical stages, the composition of non-medical expenditure, and the time loss for the cancer patient and their family were assessed. All expenditure data were inflated to the 2014 Chinese Yuan [CNY; 1 CNY = 0.163 USA dollar (USD)].Results: A total of 2,401 stomach cancer patients with a mean age of 58.1 ± 11.4 years were included, predominately male. The overall average direct expenditure per patient was estimated to be US $9,899 (medical expenditure 91.2%, non-medical expenditure 8.8%), and the expenditures for stage I, II, III, and IV were $8,648, $9,004, $9,810, and $10,816, respectively; expenditure in stage III and IV was significantly higher than that in stages I and II (p < 0.05). One-year out-of-pocket expenditure of a newly diagnosed patient with stomach cancer was $5,368, accounting for 63.8% of their previous-year household income, which led to 79.2% families suffering an unmanageable financial burden. The average loss of time for patients and caregivers was $996.Conclusions: This study indicated that the economic burden of stomach cancer in urban China was onerous. Effective intervention is necessary to reduce the financial burden by reducing the personal payment ratio and increasing the reimbursement ratio.

Healthcare utilization and costs of pediatric home mechanical ventilation in Canada.

Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, including family caregiver time. Our objective was to examine public and private healthcare utilization and costs for children using HMV, and variables associated with highest costs. Longitudinal, prospective, observational cost analysis study (2012-2014) collecting data on public and private (out-of-pocket, third-party insurance, and caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM, and Caregiving Impact Scale (CIS) were measured at baseline and study completion. Regression modeling examined a priori selected variables associated with monthly costs using Andersen and Newman's framework for healthcare utilization, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($1CAD = $0.78USD). Forty two children and their caregivers were enrolled. Overall median (interquartile range) monthly healthcare cost was $12 131 ($8159-$15 958) comprising $9929 (89%) family caregiving hours, $996 (9%) publicly funded, and $252 (2%) out-of-pocket (<1% third-party insurance) costs. With higher FIM score (lower dependency), median costs were reduced by 4.5% (95% confidence interval: 8.3%-0.5%), adjusted for age, sex, tracheostomy, and daily ventilation duration. Note: since the three cost categories did not sum to the total statistically derived median cost, the percentage of each category used the sum of median public + caregiver lost time + private out-of-pocket + third-party insurance as the denominator. For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.

The Influence of School-Based Family Counseling on Elementary Students and Their Families

A family counseling intervention grounded in systemic family therapy was conducted in a Title I school-based setting with ( N = 48) kindergarten through sixth-grade student-clients and their primary caregivers. Families’ perception of family communication and satisfaction on the Family Adaptability and Cohesion Evaluation Scale-IV was investigated to determine changes in the percentile score at three benchmarks. A repeated measure analysis of variance indicated a statistically significant difference over time in caregivers’ perception of family communication and satisfaction after 5 and 10 weeks. There was no difference in relationship to gender. School-based family counseling programs can contribute to improved family communication and satisfaction. School-based counselors can partner with institutions of higher education to provide free and accessible counseling for students and families in the greatest need.

Modifiable child and caregiver factors that influence community participation among children with Down syndrome

Purpose To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome. Methods Cross-sectional data from a study investigating quality of life of children with intellectual disability were analysed. Participants were caregivers of 89 children with Down syndrome (54 females; 83 school attenders) (mean age 11 y 1 mo; SD 4 y 1 mo). Components of participation (attendance, involvement) were measured using the Participation and Environment Measure for Children and Youth, community module. Caregiver factors were time, mood, transport, and disability funding. Child factors were sleep, behaviour, communication, and health. Multivariate linear regression analyses examined if (i) caregiver factors were associated with attendance and (ii) child factors were associated with involvement. Results Increased caregiver time availability was associated with higher frequency of attendance. Higher frequency of attendance was associated with greater child involvement, and having a sleep breathing disorder and less verbal communication ability was associated with less child involvement. These factors combined explained 21% of the variance. Conclusions Children with Down syndrome who participated in the community more frequently enjoyed greater involvement. Supporting participation of children with poorer verbal communication and/or sleep breathing disorders could further the participation of children with Down syndrome. Implications for rehabilitation Children with Down syndrome who more frequently attended opportunities for participation were more likely to be involved in those experiences. Healthcare providers and educators could foster involvement in participation opportunities of children with poorer verbal ability by supporting the development of prerequisite communication strategies. Rehabilitation programs and policies pertaining to accessibility of community activities need to align with modifiable determinants of participation in children, including availability of caregivers’ time.

Exploring the role of managers in the development of a safety culture in seven French healthcare facilities: a qualitative study

BackgroundNumerous studies have been conducted over the past 15 years to assess safety culture within healthcare facilities; in general, these studies have shown the pivotal role that managers play in its development. However, little is known about what healthcare managers actually do to support this development, and how caregivers and managers represent managers’role. Thus the objectives of this study were to explore: i) caregivers and managers’ perceptions and representations of safety, ii) the role of managers in the development of safety culture as perceived by themselves and by caregivers, iii) managers’ activities related to the development of safety culture.MethodsAn exploratory, multicentre, qualitative study was conducted from May 2014 to March 2015 in seven healthcare facilities in France. Semi-structured interviews were conducted with managers (frontline, middle and top level) and caregivers (doctors, nurses and nurse assistants) and on-site observations of two managers were carried out in all facilities. A thematic analysis of semi-structured interviews was performed. Observed activities were categorised using Luthans’ typology of managerial activities.ResultsParticipants in semi-structured interviews (44 managers and 21 caregivers) expressed positive perceptions of the level of safety in their facility. Support from frontline management was particularly appreciated, while support from top managers was identified as an area for improvement. Six main categories of safety-related activities were both observed among managers and regularly expressed by participants. However, caregivers’ expectations of their managers and managerial perceptions of these expectations only partially overlapped.ConclusionsThe present study highlights current categories of managerial activities that foster safety culture, and points out an important gap between caregivers’ expectations of their managers, and managerial perceptions of these expectations. The findings underline the need to allow more time for managers and caregivers to talk about safety issues. The results could be used to develop training programs to help healthcare managers to understand their role in the development of safety culture.

Hospital-based or home-based administration of oncology drugs? A micro-costing study comparing healthcare and societal costs of hospital-based and home-based subcutaneous administration of trastuzumab

ObjectiveTo investigate resource use and time investments of healthcare professionals, patients and their family and to compare healthcare and societal costs of one single hospital-based and one single home-based subcutaneous administration of trastuzumab in The Netherlands. MethodWe conducted a bottom-up micro-costing study. Patients diagnosed with HER2+ early or metastatic breast cancer were recruited in four Dutch hospitals. For healthcare costs, data were collected on drug use, consumables, use of healthcare facilities, time of healthcare professionals, and travelling distance of the nurse. For societal costs, data were collected on patient and family costs (including travelling expenses and time of informal caregivers) and productivity losses of paid and unpaid work. ResultsSocietal costs of one single administration of SC trastuzumab were €1753 within the home-based and €1724 within the hospital-based setting. Drug costs of trastuzumab were identical in both settings (€1651). Healthcare costs were higher for home-based administration (€91 versus €47) mainly because of more time of healthcare professionals (110 versus 38 minutes). Costs for patient and family were, however, lower for home-based administration due to travelling expenses (€7 versus €0) and time of informal caregivers (€14 versus €4). Costs for productivity losses were similar for both settings. ConclusionsHome-based subcutaneous administration of trastuzumab is more time consuming for healthcare professionals and therefore more costly than hospital-based administration. The total budget impact can be large considering that a large number of patients receive a large number of cycles of oncology treatments. If home-based administration is the way forward, novel approaches are crucial for ensuring efficiency of home-based care.

Societal cost of childhood intellectual disability in Australia.

There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall-based questionnaire. Time spent providing care because of the child's disability was obtained using a time-use diary. The total cost of ID in Australia was estimated to be AUD 72027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services.

Describing the resource utilisation and costs associated withvertebral fractures: the Build Better Bones with Exercise (B3E) Pilot Trial

This exploratory economic analysis examined the health resource utilisation and costs experienced by women with vertebral fractures, and explored the effects of home exercise on those costs. Women ≥ 65years with one or more X-ray-confirmed vertebral fractures were randomised 1:1 to a 12-month home exercise programme or equal attention control group. Clinical and health system resources were collected during monthly phone calls and daily diaries completed by participants. Intervention costs were included. Unit costs were applied to health system resources. Quality of life (QoL) information was collected via EQ-5D-5L at baseline, 6 and 12months. One hundred and forty-one women were randomised. Overall total costs(CAD 2018) were $664,923 (intervention) and $614,033 (control), respectively. The top three cost drivers were caregiver time ($250,269 and $240,811), medications ($151,000 and $122,145) and AEs ($58,807 and $71,981). The mean cost per intervention participant of $9365 ± $9988 was higher compared with the mean cost per control participant of $8772 ± $9718. The mean EQ-5D index score was higher for the intervention participants (0.81 ± 0.11) compared with that of controls (0.79 ± 0.13). The differences in quality-adjusted life year (QALY) (0.02) and mean cost ($593) were used to calculate the ICER of $29,650. Women with osteoporosis with a previous fracture experience a number of resources and associated costs that impact their care and quality of life. Caregiver time, medications and AEs are the biggest cost drivers for this population. The next steps would be to expand this feasibility study with more participants, longer-term follow-up and more regional variability.

Family Perceptions of Quality of Life for Pediatric Home Ventilator Patients

Home mechanical ventilation is an alternative to institutional management for some children with chronic or degenerative respiratory and neuromuscular disorders. Over the past 20 years, Children’s Hospital of Philadelphia has enhanced its Home Care Home Ventilator Program, designed to transition hospitalized children requiring long-term mechanical ventilation safely home. Program goals include supporting patient safety, medical stability, and caregiver competence while promoting quality of life. This longitudinal quality improvement project examined perceived quality of life for families with children discharged home for the first time on mechanical ventilation. We sought to identify unmet needs related to this transition. A self-report quality-of-life survey adapted from several validated tools was completed by the primary caregiver at 3 specific times over 6 months. Repeated-measures general linear modeling examined changes over time in caregivers’ perceptions of quality of life and confidence in meeting their child’s ongoing healthcare needs. After completing the inpatient portion of the program, followed by 6 months caring for their child at home with support from the hospital’s Home Care Department and Technology Dependence Center, caregivers reported more time to attend to their own needs and family activities, less financial burden, less anxiety, and perceived improvements in their child’s health and quality of life compared with hospitalization. Based on our findings, one program change was implemented: the Home Care social worker now meets with the family prior to discharge.

Costs and Resource Use Associated with Community-Dwelling Patients with Alzheimer's Disease in Japan: Baseline Results from the Prospective Observational GERAS-J Study.

Background:As the Japanese population ages, caring for people with Alzheimer’s disease (AD) dementia is becoming a major socioeconomic issue.Objective:To determine the contribution of patient and caregiver costs to total societal costs associated with AD dementia.Methods:Baseline data was used from the longitudinal, observational GERAS-J study. Using the Mini-Mental State Examination (MMSE) score, patients routinely visiting memory clinics were stratified into three groups based on AD severity. Health care resource utilizationwas recorded using the Resource Utilization in Dementia questionnaire. Total monthly societal costs were estimated using Japan-specific unit costs of services and products (patient direct health care use, patient social care use, and informal caregiving time). Uncertainty around mean costs was estimated using bootstrapping methods.Results:Overall, 553 community-dwelling patients withADdementia (28.3% mild[MMSE21-26], 37.8% moderate[MMSE 15-20], and 34.0% moderately severe/severe [MMSE < 14]) and their caregivers were enrolled. Patient characteristics were: mean age 80.3 years, 72.7% female, and 13.6% living alone. Caregiver characteristics were: mean age 62.1 years, 70.7% female, 78.8% living with patient, 49.0% child of patient, and 39.2% sole caregiver. Total monthly societal costs of AD dementia (Japanese yen) were: 158,454 (mild), 211,301 (moderate), and 294,224 (moderately severe/severe). Informal caregiving costs comprised over 50% of total costs.Conclusion:Baseline results of GERAS-J showed that total monthly societal costs associated with AD dementia increased with AD severity. Caregiver-related costs were the largest cost component. Interventions are needed to decrease informal costs and decrease caregiver burden.

Impact of stakeholder perspectives on cost-effectiveness estimates of four specialized nutritious foods for preventing stunting and wasting in children 6\u201323\u2009months in Burkina Faso

BackgroundMultiple specialized nutritious food options are programmed for supplementation in humanitarian and development settings. However, comparative cost-effectiveness evidence is lacking, let alone incorporation of perspectives from uncompensated stakeholders. A Burkina Faso trial evaluated the cost-effectiveness of Corn Soy Blend Plus w/ oil (CSB+ w/oil, reference arm), Corn Soy Whey Blend w/oil (CSWB w/oil), Super Cereal Plus (SC+), and Ready-to-Use Supplementary Food (RUSF) in reducing stunting and wasting among children 6–23 months old. This paper presents cost-effectiveness findings from multiple stakeholders’ perspectives, including caregivers and program volunteers.MethodsAn activity-based costing with ingredients approach was used to summarize cost of the 18-month-long blanket supplementary feeding for each enrolled child (in 2018 USD). Time data were collected using self-reported and observational instruments. Cost-effectiveness relative to CSB+ w/oil assessed incremental cost per enrolled child against incremental outcomes: prevalence of stunting at 23 months of age and number of months of wasting. Two combined perspectives were compared: program (donor, implementer, and volunteer) versus program and caregiver (adding caregiver).ResultsA total of 6112 children were enrolled. While similar effectiveness was found in three arms (CSWB w/oil was less effective), costs differed. Product cost and caregiver time to prepare study foods were major drivers of cross-arm cost differences from the respective combined perspective. The two major drivers were used to construct uncertainty ranges of cost per enrolled child from program and caregiver perspective: $317 ($279- $355) in CSB+ w/oil, $350 ($327- $373) in CSWB w/oil, $387 ($371- $403) in RUSF, and $434 ($365- $503) in SC+. Cost from program and caregiver perspective was a substantial increase from program perspective. CSB+ w/oil was most cost-effective in reducing stunting and wasting, and this main finding was robust to changing perspectives and all corresponding sensitivity analyses when uncompensated time was valued at minimum wage ($0.36/h). The break-even point for uncompensated time valuation is >$0.84/h, where RUSF became the most cost-effective from the program and caregiver perspective. Relative cost-effectiveness rankings among the other three arms depended on choice of perspectives, and were sensitive to values assigned to product cost, international freight cost, opportunity cost of time, and outcomes of a hypothetical control. Volunteer opportunity cost did not affect arm comparisons, but lack of compensation resulted in negative financial consequences for caregivers.ConclusionsEvaluating cost-effectiveness by incorporating uncompensated stakeholders provided crucial implementation insights around nutrition products and programming.Trial registrationTrial registration number: NCT02071563.Name of registry: ClinicalTrials.govURL of registry: https://clinicaltrials.gov/ct2/show/NCT02071563?type=Intr&cond=Malnutrition&cntry=BF&draw=2&rank=9Date of registration: February 26, 2014.Date of enrollment of first participant: July 2014.

Dying With Dementia: Caregiver Observations of Their Family Members' Physical Decline and Behavioral or Psychological Changes During Their Last Days.

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers' perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members' last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

Japanese encephalitis vaccination in the Philippines: A cost-effectiveness analysis comparing alternative delivery strategies

IntroductionJapanese encephalitis (JE) is a mosquito-borne viral infection of the brain that can cause permanent brain damage and death. In the Philippines, efforts are underway to deliver a live attenuated JE vaccine (CD-JEV) to children under five years of age (YOA), who are disproportionately infected. Multiple vaccination strategies are being considered. MethodsWe conducted a cost-effectiveness analysis comparing three vaccination strategies to the current state of no vaccination from the societal and government perspectives: (1) national routine vaccination only, (2) sub-national campaign followed by national routine, and (3) national campaign followed by national routine. We developed a Markov model to estimate impact of vaccination or no vaccination over the child’s lifetime horizon, assuming an annual incidence of 10.6 cases per 100,000.Costs of illness ($859/case), vaccine ($0.50/dose), routine vaccination ($0.95/dose), and campaign vaccination ($0.98/dose) were based on hospital financial records, expert opinion and literature. The societal perspective included transportation and opportunity costs of caregiver time, in addition to costs incurred by the health system. ResultsJE vaccination via national campaign followed by national routine delivery was the most cost-effective strategy modeled with a cost per disability adjusted life year (DALY) averted of $233 and $29 from the government and societal perspectives, respectively. Results were similar for other delivery strategies with cost/DALY ranging from $233 to $265 from the government perspective and $29–$57 from the societal perspective. JE vaccination was projected to prevent 27,856–37,277 cases, 5571–7455 deaths, and 173,233–230,704 DALYs among children under five over 20 consecutive birth cohorts. Total incremental costs of vaccination versus no vaccination over 20 birth cohorts were $6.6–$9.8 million from the societal perspective ($230 K–$440 K annually) and $45.9–$53.9 million ($2.2 M–$2.7 M annually) from the governmental perspective. ConclusionVaccination with CD-JEV in the Philippines is projected to be cost-effective, reducing long-term costs associated with JE illness and improving health outcomes compared to no vaccination.