Profiles of Met and Unmet Needs in People with Dementia According to Caregivers’ Perspective: Results from a European Multicenter Study

ObjectivesThis exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles.DesignA longitudinal international cohort study.Setting and ParticipantsThe baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis.MethodsA latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles.ResultsFour distinct need profiles were identified through latent class analysis. These comprised a “no need” profile (41% of the sample), a “met psychological needs” profile (25%), a “met social needs” profile (19%), and an “unmet social needs” profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the “unmet social needs” profile.Conclusions and ImplicationsIn this large European sample, there was a subgroup of persons with dementia with high “unmet social needs” whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs

BackgroundTelehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers.ObjectiveWhat factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services?MethodsRetrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status.ResultsAge (ages 23–30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23–30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access.ConclusionsDisparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.     

Screening behaviors for diabetic foot risk and their influencing factors among general practitioners: a cross-sectional study in Changsha,China

Background

Stroke is one of the leading causes of death and the main cause of long-term disability in the United States. The significant risk factors of stroke among Hispanics are well-documented. The majority of stroke survivors return home following a stroke and are cared for by family caregivers. Due to the abrupt nature of strokes, caregivers experience unexpected changes and demands that oftentimes lead to caregiver burden and depression. Given the significant risk factors for stroke in Hispanics and the influence of culture in family norms and family management, we developed a telephone and online problem-solving intervention for Spanish-speaking stroke caregivers. This study tests the impact of a telephone and online problem-solving intervention for Spanish-speaking stroke caregivers on caregiver outcomes.

Methods

The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 290 caregivers from 3 Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a problem-solving intervention that uses telephone and online education and care management tools on the previously developed and nationally available RESCUE en Español Caregiver website. In the usual care group, participants receive the information and/or support caregivers of veterans with stroke normally receive through existing VA resources (e.g., stroke-related information and support). The primary outcome is change in caregiver’s depressive symptoms at 1- and 12-weeks post-intervention. Secondary outcomes include changes in stroke caregivers’ burden, self-efficacy, problem-solving, and health-related quality of life (HRQOL) and veterans’ functional abilities. We will also determine the budgetary impact, the acceptability of the intervention and participation barriers and facilitators for Spanish-speaking stroke caregivers.

Discussion

This is an ongoing study. It is the first known randomized controlled trial testing the effect of a telephone and online problem-solving intervention in Spanish for caregivers of veterans post-stroke. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post-stroke.

Trial registration

ClinicalTrials.gov: NCT03142841— Spanish Intervention for Caregivers of Veterans with Stroke (RESCUE Español). Registered on February 23, 2018. Protocol version 8. 08.11.2022.

     

Types of stroke-related deficits and their impact on family caregiver’s depressive symptoms,burden, and quality of life

BackgroundStroke caregiving has been associated with higher rates of caregiver burden, depression, and lower quality of life compared to non-caregivers. Little is known about relationships between stroke survivors’ Cognitive/Emotional and Motor/Functional deficits and caregivers’ outcomes.ObjectiveTo determine the relationship between stroke survivors’ Cognitive/Emotional deficits and Motor/Functional deficits and caregivers’ depression, burden, and quality of life.MethodThis is a retrospective secondary data analysis. The sample consisted of 109 caregivers of stroke survivors. Step-wise linear multiple regression analyses were conducted to determine if Cognitive/Emotional deficits and/or Motor/Functional deficits, were predictive of caregivers’ depressive symptoms, burden, physical quality of life, and mental quality of life.ResultsThe Cognitive/Emotional deficits category was a better predictor than the Motor/Functional deficit of caregivers’ depressive symptoms, burden, and mental quality of life. The Cognitive/Emotional deficit score positively predicted both depression (β = .49, p < .001) and burden (β = 0.39, p < .001) and negatively predicted mental quality of life (β = ?0.42, p < .001), though it did not significantly predict physical quality of life (β = ?0.01, p = .90). The motor/functional deficits failed to significantly predict any of the caregiver outcomes (all p-values >.05).ConclusionsThe Cognitive/Emotional deficits appear to impact caregiver well-being more than the Motor/Functional deficits. Understanding the impact of Cognitive/Emotional and Motor/Functional deficits on caregivers can help clinicians identify caregivers at the highest risk for negative outcomes.     

Challenges for psychosocial rehabilitation services in the Lisbon Metropolitan Area: A qualitative approach

In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.     

The impact of the energy cost of walking on the quality of life of post-stroke individuals: A one-year longitudinal study

BackgroundThe increased energy cost of walking (Cw) for stroke patients affects the walking function and walking independence of stroke patients. However, its impact on quality of life (QoL) has never been studied.ObjectiveAssess the association between Cw and QoL for post-stroke individuals in the year following hospital discharge.MethodThirty-seven individuals with stroke were included. QoL was assessed by the EuroQol-5 Dimensions on the day after hospital discharge (T0), at six months (T1) and at one year after hospital discharge (T2). Concomitant an evaluation of Cw, mood disorders (HADS), fatigue, independence in activities of daily living and the presence of a family caregiver was performed. The association between QoL and the different covariates was analyzed using multiple regression analysis.ResultsAt T2, data from 29 individuals were analyzable. Multiple regression analyses showed Cw had a significant influence on the QoL at T1 (coeff ?0.42 (?0.71 to ?0.12), P = .008) and T2 (coeff ?0.49 (?0.71 to ?0.26), P < .001). HADS score was the only other variable to significantly impact variances of QoL at T0, T1 and T2. Moreover, we showed that Cw at T0 explained 29% of variances of QoL at T1 and 42% at T2.ConclusionCw appears to be an independent factor in the QoL of individuals with stroke at six months and one year after hospital discharge. In addition, the initial Cw and HADS are predictive of QoL at one year highlighting the importance of early interventions in these two dimensions to improve QoL over the long term.     

Associations in Sense of Coherence and Depression in Caregivers of Stroke Survivors Across 2 Years

The objective of this longitudinal study was to detect the relationship between the sense of coherence (SOC), which is an adaptive coping response, and depression in informal caregivers of stroke survivors across 2 years. One-hundred-fifteen veterans, who were hospitalized after experiencing an acute stroke, and their informal caregivers were enrolled prior to discharge. Data were collected via face-to-face in-home interviews at 1, 6, 12, 18, and 24 months after discharge. A linear mixed model was fitted to estimate the effects of the time-dependent covariates (SOC) while considering the dependence of outcome measures at repeated times. Based on the linear mixed model, caregivers with a stronger SOC were associated with lower levels of caregiver depression across 2 years following a stroke (p < 0.0001). SOC seems to be an important aspect of a caregiver’s capacity to cope after tending to the needs of a stroke patient.     

Exploring changing needs following minor stroke

Medical advances have led to many of the severe consequences of stroke being averted. Consequently, more people are being discharged from hospital following treatment for what is classed as minor stroke. The needs of people with minor stroke have received little research attention. The aim of the current study was to conduct an exploratory prospective needs analysis to document the unmet health, rehabilitation and psychosocial needs of a recently hospitalised minor stroke cohort approximately 2 weeks (T1) and 2 months (T2) post‐hospital discharge. An exploratory cohort design was used to explore the unmet health, service and social needs of 20 patients with minor stroke. Participants completed questionnaires (Survey of Unmet Needs and Service Use, Mayo‐Portland Adaptability Inventory‐4, Exeter Identity Transition Scales, RAND 36‐Item Health Survey 1.0) at T1 and T2. Nine participants reported unmet needs at T1 and seven participants reported unmet needs at T2. Between T1 and T2, there was a significant improvement in perceived role limitations due to physical health. Participation in society was significantly better at T2. In conclusion, patients with minor stroke report health, service and social needs that are unmet by existing services. This patient cohort urgently requires co‐ordinated services to detect and manage these unmet needs.     

Association between caregiver opposition to topical fluoride and COVID-19 vaccines

PurposeCaregivers who oppose topical fluoride in dental settings may be opposed to other preventive health treatments, including COVID-19 vaccines. The study objective was to examine the association between caregiver opposition to topical fluoride and COVID-19 vaccines.MethodsThe study took place at the University of Washington in Seattle, WA. English-speaking caregivers of children aged < 18 years were eligible to participate. An 85-item REDCap survey was administered from February to September 2021. The predictor variable was topical fluoride opposition (no/yes). The outcome was COVID-19 vaccine opposition (no/yes). The models included the following covariates: child and caregiver age; caregiver race and ethnicity, education level, dental insurance type, parenting style, political ideology, and religiosity; and household income. Logistic regression models generated odds ratios (OR) and 95 % confidence intervals (α = 0.05).ResultsSix-hundred-fifty-one caregivers participated, and 403 caregivers with complete data were included in the final regression model. Mean child age was 8.5 years (SD 4.2), mean caregiver age was 42.1 years (SD 9.1), 53.0 % of caregivers were female, 57.3 % self-reported as white, and 65.5 % were insured by Medicaid. There was a significant positive association between topical fluoride and COVID-19 vaccine opposition (OR = 3.13; 95 % CI: 1.87, 5.25; p < 0.001). Other factors associated with COVID-19 vaccine opposition included conservative political views (OR = 2.77; 95 % CI: 1.26, 6.08; p < 0.011) and lower education (OR = 3.47; 95 % CI: 1.44, 8.38; p < 0.006).ConclusionsCaregivers opposed to topical fluoride in dental settings were significantly more likely to oppose COVID-19 vaccines for their child. Future research should identify ways to address both topical fluoride and vaccine opposition to prevent diseases in children.     

The longitudinal associations between mental health indicators and digital media use and physical activity during adolescence: A latent class approach

IntroductionEvidence for the relationship between movement behaviors and mental health among adolescents is inconclusive. We aimed to identify profiles of digital media use (including related bedtime delay) and leisure-time physical activity (LTPA) in adolescence, and to examine whether preadolescent mental health predicted later behavior profiles.MethodsThis study included 1285 participants assessed at 11 years of age, and followed-up four years later. Participants completed the Self-Perception Profile for Children (SPPC), Center for Epidemiological Studies Depression Scale for Children (CES-DC) and Screen for Child Anxiety-Related Emotional Disorders (SCARED) at baseline, and reported digital media use (active and passive use, gaming, and related bedtime delays) and LTPA at follow-up. A latent class approach was employed to identify behavior profiles, membership of which was then predicted with mental health and covariates, including baseline digital media use and LTPA.ResultsWe identified four behavior profiles: 1) high digital media use/moderate LTPA (20% of adolescents; 78% boys), 2) moderate digital media use/high LTPA (31%; 28%), 3) high digital media use/high LTPA (26%; 15%), 4) high passive digital media use and gaming/low LTPA (23%; 89%). After adjusting for covariates, higher LTPA and better perception of athletic competence at baseline associated with higher odds of belonging to any other profile than to the unhealthiest profile (4) at follow-up. Symptoms of depression or anxiety did not associate with later behavior profiles.ConclusionsLTPA and related self-esteem seem to be stronger predictors of future digital media use and LTPA behavior during adolescence than mental health symptoms alone.     

Healthcare Utilization After Stroke: A 1-Year Prospective Study

ObjectivesThis study was undertaken to investigate the predictive value of disease-related factors, contextual factors, and functioning on the use of healthcare for 1 year after stroke.DesignA prospective study.Setting and ParticipantsIn total, 219 patients with stroke admitted to a hospital stroke unit were included.MethodsData were obtained through medical records, structured interviews, and assessments. Multivariable regression analyses were used to explore the association between the independent variables (stroke severity, comorbidity, age, sex, civil status, private financing, sense of coherence, cognitive function, walking ability, social everyday activities prestroke, and recent fall) and the use of inpatient or outpatient care 0 to 3, 3 to 6 and 6 to 12 months after stroke.ResultsMean age of the participants was 70 years, 43% were women, and 71% experienced mild stroke severity. All participants received inpatient care at 0 to 3 months, about one-fifth used inpatient care at 3 to 6 or 6 to 12 months, and all received outpatient care all 3 time periods. Moderate-severe stroke (P < .001), a lower age (P = .002), and walking disability (P < .001) were associated with a higher use of inpatient care 0 to 3 months after stroke. Living alone (P = .025) and recent fall (P = .05) were associated with a higher use of inpatient care 3 to 6 months after stroke. None of the independent variables were associated with use of inpatient care 6 to 12 months. Moderate-severe stroke (0–3; 3–6 months: P < .001, 6–12 months: P = .004), a lower age (0–3 months: P = .002, 3–6 months: P = .001, 6–12 months: P = .006), and walking disability (P < .001) were associated with a higher use of outpatient care in all 3 time periods.Conclusions and ImplicationsModerate-severe stroke, lower age, and walking disability are important predictors of healthcare utilization after stroke. The findings inform efforts to identify and support people with stroke who have the potential for high healthcare utilization in the year post stroke.     

Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.     

Family caregivers’ perceptions of hospital‐based allied health services post‐stroke: Use of the Measure of Processes of Care to investigate processes of care

Aim: To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting. Methods: The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed. Results: The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision. Conclusion: The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver‐identified areas of weakness in current clinical practice.     

A Healthy Life for African American Women Caregivers: A Concept Mapping Study

ObjectiveAfrican American women experience a higher burden of caregiving, but they are often underrepresented in studies on caregiver health. This study used a participatory process to elucidate how African American women caring for older adults view health and factors that influence health.MethodsWe invited African American women ages 24–64 years old who reported caring for an older adult for group concept mapping, a process consisting of five steps: 1) preparation, 2) idea generation, 3) sorting and rating, 4) creating maps, and 5) interpreting maps. Participants (n = 29) first completed idea generation by responding to the focus prompt “A healthy life for a caregiver includes _____.” Participants then sorted ideas into clusters based on conceptual similarity and rated each idea on desirability and importance. Data were managed via The Concept System Global MAX Software.ResultsIdea generation identified 512 ideas that reduced to 99 unique ideas. Using the 99 ideas, a cluster map with 12 outcome domains best fit the data. Identified clusters included spirituality, maintaining relationships, good character, taking action to cope, preserving oneself, support, personal empowerment, resources, striving for peace, handling emotions, wellness, and taking care of self and place. Forty-three ideas representing 10 of the 12 domains were rated high for desirability and importance.ConclusionA participatory research method was used to integrate the voices of African American women caregivers and provide a rich set of elements necessary for their health and well-being. We also identified potential focus areas for interventions aimed at promoting the health of these caregivers.     

Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand

In Thailand, the crude death rate from stroke is 10.9/100 000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse‐led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver’s strain and quality of life. This was a non‐randomised comparative study with concurrent controls, using a two‐group pre‐test and post‐test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ‐28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.     

Impacts of care‐giving and sources of support: a comparison of end‐of‐life and non‐end‐of‐life caregivers in Canada

This is the second in a series of papers that deal with care‐giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short‐term, long‐term and end‐of‐life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non‐EOL caregivers (short‐term and long‐term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long‐term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care‐giving experience and the caregiver supports received, while also examining the differences in these across EOL and non‐EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non‐EOL caregivers. The study revealed that with respect to socio‐demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non‐EOL caregivers are experiencing negative impacts from their care‐giving role, comparatively greater supports are needed for EOL caregivers.     

Formative research to address vaccine hesitancy in Tajikistan

IntroductionIncomplete childhood vaccination is associated with caregiver vaccine hesitancy, conceptualized by “3 Cs”: high complacency, low confidence, and low convenience. To expand on existing evidence drawn primarily from the Americas and Europe, and develop culturally appropriate interventions, this research explored drivers of vaccine hesitancy in the Central Asian country of Tajikistan.MethodsIn twelve diverse districts, clinic-based immunization record abstraction identified purposive samples of children who were up-to-date (N = 300) or not (N = 300) on all first year vaccines. Using a modified case-control design, the structured face-to-face in-home survey of 600 caregivers compared knowledge, attitudes and practices regarding childhood vaccination by up-to-date status. Socio-demographic and psychological factors associated with hesitancy were identified, using a 22-item vaccine hesitancy scale, with subscales measuring complacency, confidence, and convenience. Overall contribution of vaccine hesitancy to up-to-date status was modeled, adjusting for other significant covariates.ResultsCaregivers of not up-to-date children were more likely to report their child’s health as poor, and report many logistical barriers to vaccination. Knowledge of vaccine-preventable illnesses was low, and complacency regarding vaccination was high among not up-to-date caregivers. In final multivariable models of predisposing, enabling and reinforcing influences on vaccination status, urban children, those with transportation and employed mothers were more likely to be up-to-date, while not up-to-date children included those born at home, seen as having fair or poor health, or reportedly told by clinicians to avoid immunization. Reinforcing factors included having a “vaccine passport”, receiving useful information from medical providers, and believing that vaccine-preventable illnesses are serious and that most in their community are vaccinated. Additionally, vaccine hesitancy was negatively associated with up-to-date status (odds ratio 0.15, 95% C.I. 0.08, 0.26).ConclusionsResults confirm that in this traditional culture, there is a strong need for tailored communication campaigns to address vaccine hesitancy, while continuing to address systems-level barriers.