Browsing by Subject "Caregivers"
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Item Open Access An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts.(BMC geriatrics, 2011-11) Van Houtven, Courtney Harold; Voils, Corrine I; Weinberger, MorrisBackground
Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.Methods
Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.Results
The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.Conclusions
Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.Item Open Access Can caregivers report their care recipients' post-stroke hospitalizations and outpatient visits accurately? Findings of an Asian prospective stroke cohort.(BMC health services research, 2018-10-25) Tyagi, Shilpa; Koh, Gerald Choon-Huat; Luo, Nan; Tan, Kelvin Bryan; Hoenig, Helen; Matchar, David B; Yoong, Joanne; Finkelstein, Eric A; Lee, Kim En; Venketasubramanian, N; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng He; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Ng, Yu Li; Tan, Chuen SengBackground
Health services research aimed at understanding service use and improving resource allocation often relies on collecting subjectively reported or proxy-reported healthcare service utilization (HSU) data. It is important to know the discrepancies in such self or proxy reports, as they have significant financial and policy implications. In high-dependency populations, such as stroke survivors, with varying levels of cognitive impairment and dysphasia, caregivers are often potential sources of stroke survivors' HSU information. Most of the work conducted on agreement analysis to date has focused on validating different sources of self-reported data, with few studies exploring the validity of caregiver-reported data. Addressing this gap, our study aimed to quantify the agreement across the caregiver-reported and national claims-based HSU of stroke patients.Methods
A prospective study comprising multi-ethnic stroke patient and caregiver dyads (N = 485) in Singapore was the basis of the current analysis, which used linked national claims records. Caregiver-reported health services data were collected via face-to-face and telephone interviews, and similar health services data were extracted from the national claims records. The main outcome variable was the modified intraclass correlation coefficient (ICC), which provided the level of agreement across both data sources. We further identified the amount of over- or under-reporting by caregivers across different service types.Results
We observed variations in agreement for different health services, with agreement across caregiver reports and national claims records being the highest for outpatient visits (specialist and primary care), followed by hospitalizations and emergency department visits. Interestingly, caregivers over-reported hospitalizations by approximately 49% and under-reported specialist and primary care visits by approximately 20 to 30%.Conclusions
The accuracy of the caregiver-reported HSU of stroke patients varies across different service types. Relatively more objective data sources, such as national claims records, should be considered as a first choice for quantifying health care usage before considering caregiver-reported usage. Caregiver-reported outpatient service use was relatively more accurate than inpatient service use over shorter recall periods. Therefore, in situations where objective data sources are limited, caregiver-reported outpatient information can be considered for low volumes of healthcare consumption, using an appropriate correction to account for potential under-reporting.Item Open Access Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.(J Palliat Med, 2010-06) Aoun, Samar; McConigley, Ruth; Abernethy, Amy; Currow, David CINTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.Item Open Access Caring for Caregivers During COVID-19.(Journal of the American Geriatrics Society, 2020-10) Dang, Stuti; Penney, Lauren S; Trivedi, Ranak; Noel, Polly H; Pugh, Mary Jo; Finley, Erin; Pugh, Jacqueline A; Van Houtven, Courtney H; Leykum, LuciItem Open Access Community-Based Long-Term Care Services: If We Build It, Will They Come?(Journal of aging and health, 2016-03) Liu, Chang; Eom, Kirsten; Matchar, David B; Chong, Wayne F; Chan, Angelique WMObjective
This study examines the relationship between caregivers' perception of community-based long-term care (CBLTC) services and the service use.Method
We used first two waves of the longitudinal data set of 1,416 dyads of care recipients and their caregivers in Singapore. Four perceived attributes of LTC services--service quality, convenience, social connectedness, and affordability--were measured on a 5-point scale.Results
Among the four perceived attributes, perceived affordability was significantly associated with future utilization for all types of CBLTC services. Perceived service quality and convenience was significantly associated with center-based LTC services use.Discussion
Caregivers are critically involved in the decision of using CBLTC services, and their perception of service characteristics is significantly associated with the uptake of CBLTC services. It is important to incorporate both care recipients' and caregivers' needs and preferences when designing and promoting integrated health care delivery models.Item Open Access Complexities and Challenges of Singapore Nurses Providing Postacute Home Care in Multicultural Communities: A Grounded Theory Study.(Journal of transcultural nursing : official journal of the Transcultural Nursing Society, 2018-09) Wong, Alfred Ka-Shing; Ong, Shu Fen; Matchar, David Bruce; Lie, Desiree; Ng, Reuben; Yoon, Kirsten Eom; Wong, Chek HooiINTRODUCTION:Studies are needed to inform the preparation of community nurses to address patient behavioral and social factors contributing to unnecessary readmissions to hospital. This study uses nurses' input to understand challenges faced during home care, to derive a framework to address the challenges. METHODS:Semistructured interviews were conducted to saturation with 16 community nurses in Singapore. Interviews were transcribed verbatim and transcripts independently coded for emergent themes. Themes were interpreted using grounded theory. RESULTS:Seven major themes emerged from 16 interviews: Strained social relationships, complex care decision-making processes within families, communication barriers, patient's or caregiver neglect of health issues, building and maintaining trust, trial-and-error nature of work, and dealing with uncertainty. DISCUSSION:Community nurses identified uncertainty arising from complexities in social-relational, personal, and organizational factors as a central challenge. Nursing education should focus on navigating and managing uncertainty at the personal, patient, and family levels.Item Open Access Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis.(Inquiry : a journal of medical care organization, provision and financing, 2018-01) Shepherd-Banigan, Megan; Smith, Valerie A; Stechuchak, Karen M; Miller, Katherine EM; Hastings, Susan Nicole; Wieland, Gilbert Darryl; Olsen, Maren K; Kabat, Margaret; Henius, Jennifer; Campbell-Kotler, Margaret; Van Houtven, Courtney HaroldFamily caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.Item Open Access Correlates of poor health among orphans and abandoned children in less wealthy countries: the importance of caregiver health.(PLoS One, 2012) Thielman, Nathan; Ostermann, Jan; Whetten, Kathryn; Whetten, Rachel; O'Donnell, Karen; Positive Outcomes for Orphans Research TeamBACKGROUND: More than 153 million children worldwide have been orphaned by the loss of one or both parents, and millions more have been abandoned. We investigated relationships between the health of orphaned and abandoned children (OAC) and child, caregiver, and household characteristics among randomly selected OAC in five countries. METHODOLOGY: Using a two-stage random sampling strategy in 6 study areas in Cambodia, Ethiopia, India, Kenya, and Tanzania, the Positive Outcomes for Orphans (POFO) study identified 1,480 community-living OAC ages 6 to 12. Detailed interviews were conducted with 1,305 primary caregivers at baseline and after 6 and 12 months. Multivariable logistic regression models describe associations between the characteristics of children, caregivers, and households and child health outcomes: fair or poor child health; fever, cough, or diarrhea within the past two weeks; illness in the past 6 months; and fair or poor health on at least two assessments. PRINCIPAL FINDINGS: Across the six study areas, 23% of OAC were reported to be in fair or poor health; 19%, 18%, and 2% had fever, cough, or diarrhea, respectively, within the past two weeks; 55% had illnesses within the past 6 months; and 23% were in fair or poor health on at least two assessments. Female gender, suspected HIV infection, experiences of potentially traumatic events, including the loss of both parents, urban residence, eating fewer than 3 meals per day, and low caregiver involvement were associated with poorer child health outcomes. Particularly strong associations were observed between child health measures and the health of their primary caregivers. CONCLUSIONS: Poor caregiver health is a strong signal for poor health of OAC. Strategies to support OAC should target the caregiver-child dyad. Steps to ensure food security, foster gender equality, and prevent and treat traumatic events are needed.Item Open Access Depressive symptoms among informal caregivers of older adults: insights from the Singapore Survey on Informal Caregiving.(International psychogeriatrics, 2012-08) Malhotra, Chetna; Malhotra, Rahul; Østbye, Truls; Matchar, David; Chan, AngeliqueThis paper determines care recipient and caregiver characteristics and caregiving dimensions - associated with depression among caregivers of older adults, using path analysis and assesses whether the identified path model differs between spousal and adult child caregivers.Data from 1,190 dyads comprising care recipients (community-dwelling adults aged ≥ 75 years with at least one activity of daily living (ADL) limitation) and caregivers (family member/friend most involved in providing care/ensuring provision of care to care recipient), who were interviewed through the Singapore Survey on Informal Caregiving (2010-2011), were used. Using path analysis, we assessed the direct and indirect associations between primary stressors (care recipient's ADL and instrumental ADL status, and memory and behavior problems), caregiver health status, receipt of assistance from a foreign domestic worker/maid, amount of caregiving, negative reaction to caregiving, caregiver's self-esteem, perceived emotional support, and caregiver depressive symptoms.Our analysis showed that primary stressors, receipt of assistance from a foreign domestic worker/maid, perceived emotional support, and caregiver health status were directly or indirectly associated with caregiver depressive symptoms, and this association was mediated by negative reaction to caregiving. Caregiver self-esteem mediated the relationship between perceived emotional support and negative reaction to caregiving only among adult child caregivers.The results provide insights into factors associated with depressive symptoms among spousal and adult child caregivers, and help identify targeted interventions for improving caregiver mood.Item Open Access Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics.(BMC neurology, 2019-11-04) Tyagi, Shilpa; Koh, Gerald CH; Luo, Nan; Tan, Kelvin B; Hoenig, Helen; Matchar, David B; Yoong, Joanne; Chan, Angelique; Lee, Kim En; Venketasubramanian, N; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng He; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Ng, Yu Li; Tan, Chuen SengAIM:To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3-12 months post-stroke in Singapore. METHODS:Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome. RESULTS:Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3-12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization. CONCLUSION:Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.Item Open Access Dyadic approach to supervised community rehabilitation participation in an Asian setting post-stroke: exploring the role of caregiver and patient characteristics in a prospective cohort study.(BMJ open, 2020-04-23) Tyagi, Shilpa; Koh, Gerald Choon-Huat; Luo, Nan; Tan, Kelvin Bryan; Hoenig, Helen; Matchar, David Bruce; Yoong, Joanne; Chan, Angelique; Lee, Kim En; Venketasubramanian, Narayanaswamy; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng He; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Tan, Chuen SengObjective
To study the association of caregiver factors and stroke survivor factors with supervised community rehabilitation (SCR) participation over the first 3 months and subsequent 3 to 12 months post-stroke in an Asian setting.Design
Prospective cohort study.Setting
Community setting.Participants
We recruited stroke survivors and their caregivers into our yearlong cohort. Caregiver and stroke survivor variables were collected over 3-monthly intervals. We performed logistic regression with the outcome variable being SCR participation post-stroke.Outcome measures
SCR participation over the first 3 months and subsequent 3 to 12 months post-stroke RESULTS: 251 stroke survivor-caregiver dyads were available for the current analysis. The mean age of caregivers was 50.1 years, with the majority being female, married and co-residing with the stroke survivor. There were 61%, 28%, 4% and 7% of spousal, adult-child, sibling and other caregivers. The odds of SCR participation decreased by about 15% for every unit increase in caregiver-reported stroke survivor's disruptive behaviour score (OR: 0.845; 95% CI: 0.769 to 0.929). For every 1-unit increase in the caregiver's positive management strategy score, the odds of using SCR service increased by about 4% (OR: 1.039; 95% CI: 1.011 to 1.068).Conclusion
We established that SCR participation is jointly determined by both caregiver and stroke survivor factors, with factors varying over the early and late post-stroke period. Our results support the adoption of a dyadic or more inclusive approach for studying the utilisation of community rehabilitation services, giving due consideration to both the stroke survivors and their caregivers. Adopting a stroke survivor-caregiver dyadic approach in practice settings should include promotion of positive care management strategies, comprehensive caregiving training including both physical and behavioural dimensions, active engagement of caregivers in rehabilitation journey and conducting regular caregiver needs assessments in the community.Item Open Access Efficacy of BETTER transitional care intervention for diverse patients with traumatic brain injury and their families: Study protocol of a randomized controlled trial.(PloS one, 2024-01) Oyesanya, Tolu O; Ibemere, Stephanie O; You, HyunBin; Emerson, Maralis Mercado; Pan, Wei; Palipana, Anushka; Kandel, Melissa; Ingram, Darius; Soto, Mayra; Pioppo, Anne; Albert, Brittany; Walker-Atwater, Tamia; Hawes, Jodi; Komisarow, Jordan; Ramos, Katherine; Byom, Lindsey; Gonzalez-Guarda, Rosa; Van Houtven, Courtney H; Agarwal, Suresh; Prvu Bettger, JanetObjective
The purpose of this study is to examine the efficacy of BETTER (Brain Injury, Education, Training, and Therapy to Enhance Recovery) vs. usual transitional care management among diverse adults with traumatic brain injury (TBI) discharged home from acute hospital care and families.Methods
This will be a single-site, two-arm, randomized controlled trial (N = 436 people, 218 patient/family dyads, 109 dyads per arm) of BETTER, a culturally- and linguistically-tailored, patient- and family-centered, TBI transitional care intervention for adult patients with TBI and families. Skilled clinical interventionists will follow a manualized protocol to address patient/family needs. The interventionists will co-establish goals with participants; coordinate post-hospital care, services, and resources; and provide patient/family education and training on self- and family-management and coping skills for 16 weeks following hospital discharge. English- and Spanish-speaking adult patients with mild-to-severe TBI who are discharged directly home from the hospital without inpatient rehabilitation or transfer to other settings (community discharge) and associated family caregivers are eligible and will be randomized to treatment or usual transitional care management. We will use intention-to-treat analysis to determine if patients receiving BETTER have a higher quality of life (primary outcome, SF-36) at 16-weeks post-hospital discharge than those receiving usual transitional care management. We will conduct a descriptive, qualitative study with 45 dyads randomized to BETTER, using semi-structured interviews, to capture perspectives on barriers and facilitators to participation. Data will be analyzed using conventional content analysis. Finally, we will conduct a cost/budget impact analysis, evaluating differences in intervention costs and healthcare costs by arm.Discussion
Findings will guide our team in designing a future, multi-site trial to disseminate and implement BETTER into clinical practice to enhance the standard of care for adults with TBI and families. The new knowledge generated will drive advancements in health equity among diverse adults with TBI and families.Trial registration
NCT05929833.Item Open Access Essential Long-Term Care Workers Commonly Hold Second Jobs and Double- or Triple-Duty Caregiving Roles.(Journal of the American Geriatrics Society, 2020-08) Van Houtven, Courtney Harold; DePasquale, Nicole; Coe, Norma BObjectives
Long-term care (LTC) facilities are particularly dangerous places for the spread of COVID-19 given that they house vulnerable high-risk populations. Transmission-based precautions to protect residents, employees, and families alike must account for potential risks posed by LTC workers' second jobs and unpaid care work. This observational study describes the prevalence of their (1) second jobs, and (2) unpaid care work for dependent children and/or adult relatives (double- and triple-duty caregiving) overall and by occupational group (registered nurses [RNs], licensed practical nurses [LPNs], or certified nursing assistants [CNAs]).Design
A descriptive secondary analysis of data collected as part of the final wave of the Work, Family and Health Study.Setting
Thirty nursing home facilities located throughout the northeastern United States.Participants
A subset of 958 essential facility-based LTC workers involved in direct patient care.Measurements
We present information on LTC workers' demographic characteristics, health, features of their LTC occupation, additional paid work, wages, and double- or triple-duty caregiving roles.Results
Most LTC workers were CNAs, followed by LPNs and RNs. Overall, more than 70% of these workers agreed or strongly agreed with this statement: "When you are sick, you still feel obligated to come into work." One-sixth had a second job, where they worked an average of 20 hours per week, and more than 60% held double- or triple-duty caregiving roles. Additional paid work and unpaid care work characteristics did not significantly differ by occupational group, although the prevalence of second jobs was highest and accompanying work hours were longest among CNAs.Conclusion
LTC workers commonly hold second jobs along with double- and triple-duty caregiving roles. To slow the spread of COVID-19, both the paid and unpaid activities of these employees warrant consideration in the identification of appropriate clinical, policy, and informal supports. J Am Geriatr Soc 68:1657-1660, 2020.Item Open Access Expert estimates of caregiver hours for older Singaporeans with dementia.(Australasian journal on ageing, 2012-12) Riley, Crystal M; Haaland, Benjamin A; Love, Sean R; Matchar, David BAim
To obtain experts' estimates of the number of non-medical care hours required by older Singaporeans at different stages of ageing-related dementia, with low or high behavioural features.Methods
Experts on dementia in Singapore attended one of two meetings where they provided estimates of the number of care hours required for individuals at mild, moderate and severe levels of dementia with either low or high behavioural features. The experts were shown the collated responses, given an opportunity to discuss as a group, and then polled again.Results
The estimated mean care hours varied by dementia severity and the level of behavioural features. There was no interaction between dementia severity and behavioural features.Conclusion
Estimated care hours needed by individuals with dementia is independently influenced by severity of dementia and behavioural features. These estimates may be useful for policy-makers in projecting the impact of caregiving.Item Open Access Family caregiver perspectives on strengths and challenges in the care of pediatric injury patients at a tertiary referral hospital in Northern Tanzania.(PloS one, 2023-01) Keating, Elizabeth M; Sakita, Francis; Vonderohe, Maddy; Nkini, Getrude; Amiri, Ismail; Loutzenheiser, Kelly; Young, Bryan; Rent, Sharla; Staton, Catherine A; Mmbaga, Blandina T; Watt, Melissa HBackground
Pediatric injuries are a leading cause of morbidity and mortality in low- and middle-income countries (LMICs). It is important that injured children get quality care in order to improve their outcomes. Injured children are nearly always accompanied by family member caregivers invested in their outcome, and who will be responsible for their recovery and rehabilitation after discharge.Objective
The purpose of this study was to identify family member caregiver perspectives on strengths and challenges in pediatric injury care throughout hospitalization at a tertiary hospital in Northern Tanzania.Methods
This study was conducted at a zonal referral hospital in Northern Tanzania. Qualitative semi-structured in-depth interviews (IDIs) were conducted by trained interviewers who were fluent in English and Swahili in order to examine the strengths and challenges in pediatric injury care. IDIs were completed from November 2020 to October 2021 with 30 family member caregivers of admitted pediatric injured patients. De-identified transcripts were synthesized in memos and analyzed through a team-based, thematic approach informed by applied thematic analysis.Results
Strengths and challenges were identified throughout the hospital experience, including emergency medicine department (EMD) care, inpatient wards care, and discharge. Across the three phases, strengths were identified such as how quickly patients were evaluated and treated, professionalism and communication between healthcare providers, attentive nursing care, frequent re-evaluation of a patient's condition, and open discussion with caregivers about readiness for discharge. Challenges identified related to lack of communication with caregivers, perceived inability of caregivers to ask questions, healthcare providers speaking in English during rounds with lack of interpretation into the caregivers' preferred language, and being sent home without instructions for rehabilitation, ongoing care, or guidance for follow-up.Conclusion
Caregiver perspectives highlighted strengths and challenges throughout the hospital experience that could lead to interventions to improve the care of pediatric injury patients in Northern Tanzania. These interventions include prioritizing communication with caregivers about patient status and care plan, ensuring all direct communication is in the caregivers' preferred language, and standardizing instructions regarding discharge and follow-up.Item Open Access Family caregiver satisfaction with inpatient rehabilitation care.(PloS one, 2019-01) Hanson, Kristine T; Carlson, Kathleen F; Friedemann-Sanchez, Greta; Meis, Laura A; Van Houtven, Courtney H; Jensen, Agnes C; Phelan, Sean M; Griffin, Joan MIntroduction
Informal family caregivers play an increasingly important role in healthcare. Despite their role in ongoing management and coordination of care, caregiver satisfaction with the healthcare services care recipients receive has been understudied. We sought to assess what influences caregiver satisfaction with inpatient care provided to their care recipient among caregivers of veterans with traumatic brain injury (TBI) and polytrauma.Methods
Data from the Family and Caregiver Experience Survey, a national survey of caregivers of veterans with TBI and polytrauma, was used to explore factors associated with caregiver satisfaction with the care his/her care recipient received while an inpatient at a US Department of Veterans Affairs (VA) Polytrauma Rehabilitation Center. Caregiver and care recipient demographic and injury factors and potential addressable factors including social support, caregiver training received, and caregiver perceptions of being valued by the VA were evaluated for their associations with caregivers' satisfaction with their care recipients' healthcare.Results
The majority of the 524 caregivers reported being mostly or very satisfied with their care recipient's inpatient care (75%, n = 393). Higher satisfaction with inpatient care was significantly associated with greater caregiver social support, receipt of training from the VA, and perceptions of being valued by the VA, both on univariate analysis and after controlling for care recipient TBI severity and caregiver's relationship to the care recipient.Conclusions
Results suggest that supporting a strong social network for caregivers, providing caregiver training, and employing practices that communicate that family caregiving is valued by providers and healthcare organizations are promising avenues for improving caregiver satisfaction.Item Open Access Healthcare utilization and cost trajectories post-stroke: role of caregiver and stroke factors.(BMC health services research, 2018-11-22) Tyagi, Shilpa; Koh, Gerald Choon-Huat; Nan, Luo; Tan, Kelvin Bryan; Hoenig, Helen; Matchar, David B; Yoong, Joanne; Finkelstein, Eric A; Lee, Kim En; Venketasubramanian, N; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng Hee; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Ng, Yu Li; Tan, Chuen SengBackground
It is essential to study post-stroke healthcare utilization trajectories from a stroke patient caregiver dyadic perspective to improve healthcare delivery, practices and eventually improve long-term outcomes for stroke patients. However, literature addressing this area is currently limited. Addressing this gap, our study described the trajectory of healthcare service utilization by stroke patients and associated costs over 1-year post-stroke and examined the association with caregiver identity and clinical stroke factors.Methods
Patient and caregiver variables were obtained from a prospective cohort, while healthcare data was obtained from the national claims database. Generalized estimating equation approach was used to get the population average estimates of healthcare utilization and cost trend across 4 quarters post-stroke.Results
Five hundred ninety-two stroke patient and caregiver dyads were available for current analysis. The highest utilization occurred in the first quarter post-stroke across all service types and decreased with time. The incidence rate ratio (IRR) of hospitalization decreased by 51, 40, 11 and 1% for patients having spouse, sibling, child and others as caregivers respectively when compared with not having a caregiver (p = 0.017). Disability level modified the specialist outpatient clinic usage trajectory with increasing difference between mildly and severely disabled sub-groups across quarters. Stroke type and severity modified the primary care cost trajectory with expected cost estimates differing across second to fourth quarters for moderately-severe ischemic (IRR: 1.67, 1.74, 1.64; p = 0.003), moderately-severe non-ischemic (IRR: 1.61, 3.15, 2.44; p = 0.001) and severe non-ischemic (IRR: 2.18, 4.92, 4.77; p = 0.032) subgroups respectively, compared to first quarter.Conclusion
Highlighting the quarterly variations, we reported distinct utilization trajectories across subgroups based on clinical characteristics. Caregiver availability reducing hospitalization supports revisiting caregiver's role as potential hidden workforce, incentivizing their efforts by designing socially inclusive bundled payment models for post-acute stroke care and adopting family-centered clinical care practices.Item Open Access Hopefulness Among Individuals Living with Schizophrenia and their Caregivers in Tanzania: An Actor-Partner Interdependence Model(2022) Martinez, AlyssaBackground: Hopefulness is a positive orientation or state of mind that can aid in the recovery and treatment for mental illness, as it can have significant impacts on clinical and psychosocial outcomes. As resource-constrained settings work to implement recovery-oriented care, there is a need to better understand hopefulness among people living with schizophrenia (PLWS) and caregivers in their extended family networks. This study seeks to examine the dyadic relationship of hopefulness and its associated correlates among PLWS and their caregivers in Tanzania. Methods: This study utilized longitudinal data collected as part of a randomized controlled trial testing a culturally-tailored model of Family Psychoeducation in Tanzania. The Herth Hope Index was used to measure hopefulness among PLWS and their caregivers at baseline and three months post-intervention. Univariable and multivariable regression models were conducted to determine correlates of hopefulness at baseline, while the Actor-Partner Interdependence Model (APIM) was employed to examine the longitudinal, dyadic relationship of hopefulness among PLWS and their caregivers. APIM can help determine how an individuals’ level of hope at time 0 impacts his or her own level of hope at time 1 and their partner’s level of hope at time 1. Results: For PLWS and their caregivers, actor effects were less than one (PLWS, β=0.261; caregivers, β=0.318), indicating stability in hopefulness over time. Regarding partner effects, caregivers baseline hopefulness had a positive effect on PLWS hopefulness at follow-up (β=0.100). This indicates that higher caregiver hope at time 0 is associated with higher levels of hope in PLWS at time 1. Baseline hopefulness levels for PLWS had a negative effect on caregiver hopefulness at follow-up (β= -0.106). This suggests that higher PLWS hope at time 0 is associated with lower levels of hope in caregivers at time 1. Conclusions: Hopefulness seems to be interesting to consider because caregiver hopefulness can influence improvements in patient hopefulness over time. Future studies should further explore the dyadic relationship of hopefulness in this population, as hope is a non-pharmacological mechanism of change that is underutilized globally.
Item Open Access Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial.(Trials, 2020-02) Shepherd-Banigan, Megan; Smith, Valerie A; Lindquist, Jennifer H; Cary, Michael Paul; Miller, Katherine EM; Chapman, Jennifer G; Van Houtven, Courtney HBackground
Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics.Methods
We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score.Results
The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score ≤ 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (≤ 8) had slightly lower CESD-10 scores at follow-up (p < 0.001).Conclusions
Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.Trial registration
ClinicalTrials.gov, ID:NCT01777490. Registered on 28 January 2013.Item Open Access Individual and program Characteristics May Drive Variability in Outcomes After Caregivers Participate in a Tailored Support Intervention.(Journal of applied gerontology : the official journal of the Southern Gerontological Society, 2022-08) Shepherd-Banigan, Megan; Jones, Kelley A; Sullivan, Caitlin; Wang, Ke; Clark, Amy G; Van Houtven, Courtney; Olsen, Jennifer MCritically needed programs designed to support family caregivers have shown inconsistent reductions in stress and burden. To explore drivers of improvement in caregiver outcomes after participation in a support intervention we analyzed data from a one-on-one, tailored problem-solving intervention targeting caregiver wellbeing (2015-2019, n = 503). We explored data patterns across 21 individual, household, and program-level variables using elastic net regression to identify drivers of improvements, and their relative importance. Baseline subjective burden, baseline depressive symptom scores, baseline caregiver problem solving, African American race, and site and coach fixed effects were the most consistent drivers of changes across the explored caregiver outcomes. Caregiver and program characteristics may be promising avenues to target to decrease distress and burden during intervention design. Interventions focusing on highly distressed caregivers may lead to greater improvements. More research is needed to identify how site or interventionists characteristics drive positive intervention effects.
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