Long-term Caregivers Research Articles

Caregiver Wellness after Traumatic Brain Injury (CG-Well): Protocol for a randomized clinical trial

IntroductionAfter injury, survivors of moderate to severe traumatic brain injury (msTBI) depend on informal family caregivers. Upwards of 77% of family caregivers experience poor outcomes, such as adverse life changes, poor health-related quality of life, and increased depressive symptoms. Caregivers frequently report minimal support or training to prepare them for their new role. The majority of previously developed caregiver and caregiver/survivor dyad interventions after msTBI focus on providing information to either survivors only, or to long-term caregivers, rather than to the new caregiver. This manuscript describes the protocol of an ongoing randomized control trial, Caregiver Wellness after TBI (CG-Well), developed to provide education, support, and skill-building to caregivers of adults with msTBI, beginning when the survivor is early in the clinical course. MethodsWithin two weeks of admission to the ICU, participants are randomized to CG-Well online modules (intervention group, n = 50 dyads) or information, support, and referral (ISR) e-bulletins that exist in the public domain (control group, n = 50 dyads) over the first six months after their family member’s msTBI. Both groups receive regular phone calls. The primary outcome is intervention satisfaction at six months. ResultsEnrollment began in March, 2022 and is projected to complete October 2024. We have enrolled approximately 70% of participants at this time. Primary analysis completion is anticipated April, 2025. DiscussionThis RCT is designed to evaluate caregiver satisfaction by addressing the need for tailored supportive care for caregivers of msTBI beginning during the ICU admission. Trial RegistrationClinicaltrials.gov Registration Number: NCT05307640

Look on the bright side: the relation between family values, positive aspects of care and caregiver burden

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care.

Psychometric properties of the Fraboni scale of ageism (FSA) applied to long-term caregivers in nursing homes

BackgroundThe aging society has resulted in enormous demand for long-term care services. However, ageism is a common phenomenon in long-term care facilities, which not only hinders the quality of care for the recipients but also negatively influences caregivers’ well-being. In this paper, we first applied the Fraboni Scale of Ageism (FSA) to evaluate its reliability and construct validity among Chinese long-term caregivers in nursing homes. This study could contribute to assessing the prevalence of ageism in Chinese long-term caregivers, prompting facilities and the government to recognize the issue of ageism and explore necessary interventions to reduce ageism in long-term caregivers.MethodsThis is a cross-sectional study. We recruited 392 long-term caregivers using a convenience sampling strategy in nursing homes from two cities in Chinese central and northern regions. Parameters included the demographic characteristics, Cronbach’s alpha coefficients, and intraclass correlation coefficient. The construct validity was conducted by exploratory factor analysis and confirmatory factor analysis.ResultsThe Cronbach’s alpha of FSA (Chinese version) was 0.856 and ICC was 0.871. The factor analysis identified 3 principal factors, explaining 43.95% of the total variance. The 3-factor model was confirmed to fit by confirmatory factor analysis.ConclusionsThe findings confirm that the FSA is easy to use and has good psychometric properties. This study will contribute to improving the condition of ageism, thereby improving the quality of care for the elderly and retention of professional talents in the LTC system.

Investigating the Differential Impact of Short- and Long-Term Informal Caregiving on Mental Health Across Adolescence: Data From the Tokyo Teen Cohort

PurposeYoung caregivers experience, on average, poorer mental health outcomes than non–caregiving young people. However, it is unknown to what extent these effects differ with age, or among short-term versus long-term caregivers. Using repeated assessment of young caregiving across multiple waves of a prospective adolescent cohort study, we conducted repeated cross-sectional analyses of caregiver status and contemporaneous depressive symptoms, self-harm, and suicidality in early to middle adolescence. MethodsFour waves of questionnaire data from a large, longitudinal population-based cohort study (Tokyo Teen Cohort) were analyzed. Caregiver status was collected from participants aged 10, 12, 14, and 16 years. Mental health outcomes assessed were depressive symptoms, self-harm and suicidal feelings. Logistic regression analyses were conducted assessing effects of a) young caregiver status and b) new, long-term, and ex-caregiver 2-year categorizations on mental health outcomes at 12, 14, and 16 years, both unadjusted and adjusted for potential confounders (sex, low income, single-parent household, and parental distress). ResultsDepressive symptoms were elevated among long-term caregivers at 14 years (unadjusted odds ratio (uOR): 3.11 [1.33–7.27], adjusted odds ratio (aOR): 2.49 [1.03–5.99]). Borderline associations between long-term caregiving and self-harm (uOR: 3.14 [1.06–9.35], aOR: 2.51 [0.82–7.63]) and suicidal feelings (uOR: 2.49 [0.98–6.34], aOR: 2.06 [0.80–5.33]) were detected at 16 years. No associations were found at age 12 years in primary analyses; sensitivity analyses indicated possible increased depressive symptoms. DiscussionYoung caregivers with long-term caregiving roles are at the greatest risk for negative mental health outcomes, with effects concentrated in later adolescence. These findings highlight urgent need for early identification and practical and psychological support for young people shouldering caregiving burdens.

Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives

BackgroundFamily caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses’ perceptions of the family caregivers’ issues.MethodsWe did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews.ResultsOlder caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this.ConclusionIn our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

Older adults preferences for long-term caregivers in China: a discrete choice experiment

ObjectiveUnderstanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults’ preferences for long-term caregivers. Study designThis is a cross-sectional study. MethodsA national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50–70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. ResultsOlder adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. ConclusionQoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.

Long-Term Care Determinants in Türkiye: Analyzing A Comprehensive Range of Variables

By 2050, one in ten people in OECD countries will be 80 aged or older. The aging population will have several impacts on countries, such as increased demand for healthcare and social services, a smaller workforce, and a growing dependency ratio. Türkiye relies heavily on family members to provide long-term care (LTC) for their elderly. In this paper, we study the relationship between a comprehensive range of demographic and socioeconomic variables and informal long-term caregiving using the Turkish Statistical Institute’s Time Use Survey, a nationally representative micro dataset. Employing a multivariate regression analysis, we find that women are more likely to provide unpaid informal caregiving, albeit lacking strong statistical significance. The findings also reveal that being married and older are significant predictors of providing informal LTC. In contrast, we find no significant evidence that income level and house characteristics are crucial determinants of informal LTC. The findings of this study have a number of important policy implications for future practice, such as investing in healthcare and social services and developing policies to encourage LTC workforce participation.

The burden of traumatic brain injury on caregivers: exploring the predictive factors in a multi-centric study

BackgroundTraumatic brain injury (TBI) is a significant cause of mortality and morbidity worldwide. With survivors often exhibiting degrees of function loss, a significant burden is exerted on their caregivers. The purpose of this study was to explore the predictive factors of caregiver burden among caregivers of patients with TBI.MethodsSixty-eight family members of individuals with a TBI who had been admitted to three hospitals were assessed in terms of caregiver burden using the Zarit Burden Interview. The association of caregiver burden with patients’ baseline cognitive function according to the Montreal Cognitive Assessment (MoCA) test, as well as caregivers’ sociodemographic characteristics, were evaluated using multiple regression analysis.ResultsBased on the multiple regression model, the MoCA score of the patients (std β=-0.442, p < 0.001), duration of caregiving (std β = 0.228, p = 0.044), and higher education of the caregivers (std β = 0.229, p = 0.038) were significant predictors of caregiver burden.ConclusionOverall, our findings highlight the importance of taking caregivers’ psychosocial needs into account. Long-term caregivers of TBI patients with cognitive impairment should be viewed as vulnerable individuals who could benefit from psychosocial intervention programs, to improve their well-being and enabling them to enrich their care of the TBI patient.

Examine Fatigue Levels And Mental Health Among Dementia Patients' Caregivers In Saudi Arabia

Introduction: Since dementia has no treatment, its prevalence will strain healthcare systems. Dementia also impairs daily tasks, requiring long-term caregivers. Since dementia patients need 24-hour care, it can have a substantial impact on the caregivers' physical health and put a strain on their caregivers' mental health. Aim: Evaluate the extent of fatigue and mental health indicators among dementia patients' caregivers in the eastern region. Methods: A descriptive cross-sectional study was conducted from June 2023 to April 2024 at private hospitals, geriatric homes, and private homes in the eastern region of Saudi Arabia to collect data from dementia caregivers. The Fatigue Assessment Scale (FAS) and General Health Questionnaire (GHQ 12) collected data from 205 convenient dementia caregivers. Results: 50% of the participants reported fatigue, while 72% reported mild mental exhaustion. The participants had a moderate level of fatigue (M= 23.8, SD= 6.65). There is no statistically significant difference in the overall fatigue scores among relative caregivers and nurses (p=0.211); however, there is a difference between males and females (p=&lt; .001). Specifically, the females experienced more fatigue. There is no significant difference in general mental health among the two caregiver groups (p=0.211) or between genders (p = 0.085). Conclusion: The majority of the participants suffered from mild mental exhaustion, while half reported fatigue. Still, there is a difference between males and females, with females reporting more fatigue than males. Family caregivers for people with dementia encounter challenges and require comprehensive assistance to meet their demands.

DETERMINANTS OF INFORMAL CARE TRAJECTORIES IN ENGLAND

Abstract In the context of an ageing population, combined with long-standing challenges in the delivery of formal social care for older people, unpaid caregivers play a key role in promoting the quality of life of older people and their extended families and ensuring that needs for care and support are met. Although many studies have provided snapshots of informal care provision, few so far have examined longitudinal patterns of informal care provision among older people. This paper aims to describe caregiving trajectories in later life and to examine how socioeconomic, demographic, and health characteristics of older adults relate to these patterns (including needs and enabling factors). Using six waves of the English Longitudinal Study of Ageing, we conduct latent trajectory analysis to cluster people’s diverse trajectories into a finite number of groups. The intensity of informal care provision is also considered when identifying longitudinal trajectories. Preliminary results show five distinct trajectories of informal care provision (including those who never provide informal care, those who provide sporadic informal care, those with increasing and decreasing commitment to care provision, and those who care throughout). Gender, age, health, income, living arrangements, and family compositions all relate to long-term trajectories of informal care, with younger married women in good health more likely to provide informal care throughout. Support should be provided to this group of caregivers, given that engagement in long-term caregiving might be detrimental to mental health.

UNPAID CAREGIVERS’ PROCESS OF COLLABORATING DURING OLDER ADULT HOSPITAL TO HOME TRANSITIONS

Abstract Unpaid/family caregivers often provide support critical to older adult hospital to home transitions, but commonly lack time and preparation for their role. There is limited evidence regarding important collaboration and resources for caregivers during the transition. The objective of this grounded theory study was to examine caregivers’ process of collaborating with others during older adult hospital to home transitions. Interviews were conducted with unpaid caregivers of adults aged 60 and older and recently discharged from a medical/surgical unit at a large Midwestern teaching hospital, were audio-recorded, and transcribed verbatim. Data were analyzed using open, axial, and selective coding. Caregiver participants (N = 16) included spouses (n = 8), friends (n = 4), children (n = 3), and siblings (n = 1) of an older adult transitioning from hospital to home, were mostly female (n=14), and all were white, non-Hispanic. A conceptual model was developed which illustrates participants’ process of collaborating with a caregiving team, providers, networks, and other resources to support themselves and their older person. The process began with the participants taking on and identifying their role, and ultimately led to either supporting their older person’s progress towards independence or providing long-term caregiver support. Conditions, including finances, caregiver health, expectations, proximity, and availability, impacted the collaborative process. Consequences varied based on participants’ approach to caregiving, such a team versus individual approach. Implications include opportunities to promote active engagement of caregivers in the transition process and facilitation of a team-based approach to supporting the older person and caregivers.

지역사회 노인 돌봄자의 역할 및 지원 분야에 대한 고찰

This study aimed to clarify the scope and roles of caregivers, conducting an in-depth analysis to examine whether there is sufficient policy support in place for their current roles. To do so, we utilized domestic and international databases, including papers and reports from the year 2000 to 2023. We extracted and analyzed relevant literature using keywords related to the field of caregiving and informal caregivers. Policy support for the older people and family caregivers included strategies to reduce financial burden, indirect support for the older people, as well as direct support methods such as counseling and leave programs. However, there was a lack of integrated educational systems for both care recipients and informal family caregivers, leading to limitations in accessing information and support as the nature of caregiving evolved. Support policies for caregivers were institution-centric and fragmented, indicating the need for organizations overseeing caregiving comprehensively to provide education and support programs. The provision of interconnected data that both caregiving recipients and caregivers can understand is fundamental for long-term caregiving policy development. It is essential to explore practical policy measures for caregiving, enabling the formulation of integrated policies to support caregivers effectively.

Caregivers' Burden in Patients With Bipolar Disorder and Schizophrenia and Its Relationship With Anxiety and Depression in Caregivers: A Narrative Review.

Mental disorders affect a person's thinking, mood, and/or behaviour and can range in severity from minor to severe. Nearly one in five persons have a mental disease as stated by the National Institute of Mental Health. A serious mental illness called bipolar disorder causes extreme mood swings that can range from manic to depressive states.Schizophrenia is abrain condition that leads individuals to perceive reality differently. They cannot distinguish between what they are actually experiencing and what they are just imagining. Both illnesses have a variety of negative effects on the patient as well as the primary caregiver, who may be the patient's family or other relatives. In the case of a patient with mental illness, the family's role is crucial. Family members' long-term caregiving obligations may result in a caregiving burden that negatively impacts the caregivers' quality of life, career and personal relationships. Depression generally undermines carers' ability to fulfil their crucial supportive role towards their relative with a mental illness while contributing to their distress and handicap. Given the high prevalence of caregiver depression, it is critical to address this issue not just by creating therapies to treat caregiver depression once it has started, but also by preventing caregiver depression.

Insomnia Burden among Informal Caregivers of Hospitalized Lung Cancer Patients and Its Influencing Factors

ObjectiveThis study aimed to reveal the insomnia burden and relevant influencing factors among informal caregivers (ICs) of hospitalized patients with lung cancer. MethodsA cross-sectional study on ICs of hospitalized patients with lung cancer was conducted from December 31, 2020 to December 31, 2021. ICs’ burden was assessed using the Caregiver Reaction Assessment (CRA), Hospital Anxiety and Depression Scale (HADS), and Insomnia Severity Index (ISI). Linear and logistic regression models were used to identify the influencing factors. ResultsAmong 289 ICs of hospitalized patients with lung cancer, 83 (28.72%), 53 (18.34%), and 14 (4.84%) ICs experienced mild, moderate, and severe insomnia, respectively. The scores concerning self-esteem, lack of family support, financial problems, disturbed schedule, and health problems were 4.32 ± 0.53, 2.24 ± 0.79, 2.84 ± 1.14, 3.63 ± 0.77, and 2.44 ± 0.95, respectively. ICs with higher Activities of Daily Living Scale (ADLS) scores were associated with a lower risk of insomnia, with an odd ratio (OR) and 95% confidence interval (CI) of 0.940 (0.898–0.983). Among the ICs, female gender (OR = 2.597), alcohol consumption (OR = 3.745), underlying medical conditions (OR = 11.765), long-term caregiving experience (OR = 37.037), and higher monthly expenses (OR = 5.714) were associated with a high risk of insomnia. ConclusionOf the hospitalized patients with lung cancer, 51.9% experienced insomnia. Patients’ ADL, ICs gender, alcohol consumption, underlying medical conditions, caregiving duration, and monthly expenses were influencing factors. Therefore, prompt screening and early intervention for ICs of patients with lung cancer is necessary.

Multidisciplinary management of people with spina bifida across the lifespan.

The average worldwide prevalence of neural tube defects (NTDs) is 1.0 per 1000 births. Its development is multifactorial due to genetic and non-genetic factors. Spina bifida (SB) is one of main representatives of NTD. The spinal cord lesion level is the main determinant of the level of paralysis, numbness, and difficulties with bladder/bowel functions. Myelomeningocele prenatal repair reduces hydrocephalus and hindbrain herniation and improves motor function. The severity of hydrocephalus is associated with poorer neurodevelopmental outcomes whether operated on prenatally or after birth. People with SB tend to have a lower IQ and cognitive difficulties. Early diagnosis, proactivity, and lifelong multidisciplinary follow-up are key protective issues. Invasive urological interventions should be considered in selected patients after failure of conservative treatment. Transition to adult care should be well planned as it is challenging. Health literacy is directly associated with success at transition. Sexuality and fertility should be addressed before/during puberty. Overall, the rates of fecal and urinary continence and skin breakdown increase with age, whereas the ability to ambulate declines with age. Bowel and urinary incontinence are independent predictors of lower health-related quality of life (HRQoL) in adults with SB. Bowel incontinence has negative impact on HRQoL regardless of frequency or amount. Long-term caregiver support should be offered at diagnosis. Survival at a mean of 50years is poor, at 32%, due to central nervous system deaths, cancer, urological disease, and sepsis. Challenges to implementation of recommended practices exist, especially in low and middle-income countries.

Development of Capacitive Seating Analysis Sensor Using Conductive Textile for the Evaluation of Seating Motion

In this study, we developed a capacitive seating analysis sensor using a conductive textile for evaluating a Seating Motion. Physical burden on caregivers is a common problem at nursing care sites. Developing long-term caregiving skills can help reduce the physical burden on amateur caregivers. Several quantitative evaluation studies have focused on the skills of caregivers. However, such evaluation is highly expensive and require huge area because it involves the use of motion capture systems with several 3D cameras for dynamic motion analysis. In our previous study, we developed a conductive textile sensor for measuring the seating position of a care recipient in a wheelchair. The sensor could measure either seating body pressure or distance between the buttocks and the seat. The system can measure the care recipient's motion without requiring any motion capture system. We recommend using the sensor to evaluate the skills of caregivers; the sensor output can be used to determine the seating speed of the care recipient on the chair. Herein, we report the validity of the measurement system comprising a conductive textile-based capacitive seating analysis sensor for evaluating seating in nursing care.

Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases. Phase 1 involved a cross-sectional study design, with a convenience sample of 61 caregivers of patients on maintenance HD for at least 3 months. All caregivers in the study completed the Arabic version of the Zarit Burden Interview to identify caregiver burden. Phase 2 of the study involved a qualitative descriptive design involving semi-structured interviews with nine caregivers. (3) Results: Study findings indicate that caregivers did not experience severe burden. Being older, a female caregiver and having comorbidities was positively associated with increased levels of caregiver burden. In the qualitative phase of the study, a number of important factors emerged that may contribute to a reduction in caregiver burden, including social support, cultural acceptance, and religious influences. (4) Conclusion and impact: CB was found to be low when a comparison was made with other studies using similar populations. Understanding the factors that influence caregiver burden will contribute to the accurate assessment of caregiver burden and help reduce burden in informal caregivers, patients with renal failure, and others with chronic illnesses worldwide.

IMPLICATION OF SLEEPING DURATION ON THE OVERALL HEALTH STATE OF FAMILY CAREGIVERS

Abstract Family caregiving is integral to long-term care for older adults. The National Alliance for Caregiving and AARP Public Policy Institute in 2020 estimated there are 53 million Americans providing care for loved ones. Caregiving intensity often impacts the health and well-being of caregivers, including influencing their sleep duration. The Centers for Disease Control and Prevention (CDC) recommended an average of 7 or more sleeping hours for adults. Unfortunately, most caregivers' average hours of sleep per night do not meet this recommendation. Using secondary data from the Long-Term Caregiving study conducted by the AP-NORC Center for Public Affairs Research, the present study establishes the effect of sleep duration on the overall health of family caregivers while adjusting for socio-demographic factors. A binary logistic analysis was conducted to infer the effects of sleep duration, age, gender education, race, employment status, and household income relative to reporting high or low overall health wellbeing. The binary logistic model was statistically significant, χ2(16) = 77.5, p &amp;lt; .0001, Nagelkerke R2=0.111. Family caregivers with a sleeping duration of 7 hours or more were twice as likely to report a high overall health status than those who slept less than 7 hours (OR=2.08, 95%CI [1.52 – 2.84]). Increasing household income and being employed were positively associated with high overall health status. We do not find a statistically significant effect of gender, education level, age group, and race on overall health status. We recommend that policies that support family caregivers at a micro and macro level be implemented.

CHANGING FAMILY DESTINIES, DIVERGENT FAMILY CAREGIVING PATTERNS: DO BIRTH COHORTS, GENDER, RACE, AND SES MATTER?

Abstract Over the past few decades, Americans have experienced a series of demographic transitions include prolonged longevity and rise in the complexities of family structures. The Baby Boomer cohort is at the forefront of these transitions, which has profound implications on their later-life family relations and practices of family caregiving. Most caregiving literature has focused on static care experiences over a short time, while neglecting long-term care experiences. Using 10 waves of longitudinal data from HRS (2000-2018) and latent profile analysis, I identified five prominent long-term caregiving patterns: light parental caregivers (44.1%), intensive spousal caregivers (5.6%), sandwiched caregivers (5.5%), light grandchildren caregivers (38.7%), and heavy grandchildren caregivers (6.2%). Further, I conduct multinominal logistic regression to investigate how birth cohorts, gender, race, and education shaped these patterns. Results suggested that later cohorts have seen a decline in intensive spousal caregivers, light and heavy grandchildren caregivers, but an increase in light parental caregivers. Women are more likely to be sandwiched caregivers than men, and black caregivers are more likely to be intensive spousal caregivers, heavy grandchildren caregivers, and sandwiched caregivers than white. By contrast, white and more educated caregivers are more likely to be light parental caregivers, and this pattern becomes more pronounced in later cohorts. The findings suggest divergent destinies of family caregiving patterns among later cohorts. More disadvantaged groups are shouldering heavier care responsibilities than advantaged groups. Targeted care services should be implemented to ease the care burdens of the vulnerable population.

Family Communication in Autism Spectrum Disorder: Applying the Family Caregiver Communication Typology to Parent Caregivers

ABSTRACT Parents of children with Autism Spectrum Disorder (ASD) experience greater stress and caregiver burden than parents of children with other disabilities. To cope with the stress of long-term caregiving, they rely on professionals for support and guidance. However, parents continue to report unmet communication and support needs. To inform tailored communication for parents of a child with ASD, this study used the existing Family Caregiver Communication Typology framework which identifies four caregiver communication types (manager, carrier, partner, and lone) and their unique communication and support needs. In-depth, structured interviews were conducted with parents (n = 22) and ASD professionals (n = 28) to explore communication characteristics of ASD parent caregivers. A thematic analysis revealed communication behaviors among four ASD parent caregiver types, further validating the typology. Future research is needed to develop targeted interventions for improving family-centered care based on ASD parent caregiver types.