Caregiver Status Research Articles

How the caregiver status could increase the quality of life among elderly after pancreatic adenocarcinoma surgical resection with dementia status?

How the caregiver status could increase the quality of life among elderly after pancreatic adenocarcinoma surgical resection with dementia status?

Comprehensive Understanding of Hispanic Caregivers: Focus on Innovative Methods and Validations.

Alzheimer's disease (AD) and Alzheimer's disease-related disorders (ADRD) are late-onset, age-related progressive neurodegenerative disorders, characterized by memory loss and multiple cognitive impairments. Current research indicates that Hispanic Americans are at an increased risk for AD/ADRD and other chronic conditions such as diabetes, obesity, hypertension, and kidney disease, and given their rapid growth in numbers, this may contribute to a greater incidence of these disorders. This is particularly true for the state of Texas, where Hispanics are the largest group of ethnic minorities. Currently, AD/ADRD patients are taken care by family caregivers, which puts a tremendous burden on family caregivers who are usually older themselves. The management of disease and providing necessary/timely support for patients with AD/ADRD is a challenging task. Family caregivers support these individuals in completing basic physical needs, maintaining a safe living environment, and providing necessary planning for healthcare needs and end-of-life decisions for the remainder of the patient's lifetime. Family caregivers are mostly over 50 years of age and provide all-day care for individuals with AD/ADRD, while also managing their health. This takes a significant toll on the caregiver's own physiological, mental, behavioral, and social health, in addition to low economic status. The purpose of our article is to assess the status of Hispanic caregivers. We also focused on effective interventions for family caregivers of persons with AD/ADRD involving both educational and psychotherapeutic components, and a group format further enhances effectiveness. Our article discusses innovative methods and validations to support Hispanic family caregivers in rural West Texas.

P.022 Cross-cultural experiences and expectations from caregivers of people living with Parkinson’s Disease: a comprehensive review

Background: Care partners of people with Parkinson’s disease (PD) must continually cope with various stressors due to changes resulting from the disease process, including assisting and supporting with their medical, emotional, and social needs. Caregivers’ expectations, preferences, and experiences on PD management are a cornerstone to guarantee a comprehensive treatment of the disease and may be influenced or determined by cultural backgrounds. Methods: Comprehensive literature review to investigate the roles, experiences, and needs of caregivers of PwPD across cultures. We critically reviewed and analyzed the all published studies that examined the impact of cultural diversity on caregiving in PD. Results: Among some significant results, we found profound differences in caregivers’ experiences and perceptions between U.S, Mexican, and Latin-American, Asian, African and Indian caregivers. There are clear negative reinforced effects between caregiver status, education, health, labor participation and income-generating capacity, and social protection combined with the age and gender differences. Canadian information was not available. Conclusions: There is still a gap in the literature with a need for social and health services to understand the cultural factors that impact caregiver burden in PD to facilitate wellbeing and support from health and social services to better aid those in the caregiver role.

Psychological status on informal carers for stroke survivors at various phases: a cohort study in China.

In China, the risk of stroke is higher than that in developed countries such as Europe and North America. Informal caregivers play a major role in providing support to stroke survivors. Currently, only limited studies on changes in psychological state of the caregivers at different stages of stroke have been published. To investigate the stress and psychological state of informal caregivers of stroke patients in different periods and to explore the factors that affect their states. 202 informal caregivers of stroke patients were selected in a 3a-grade hospital in Chengdu, Sichuan. Follow-up was conducted by face-to-face interviews, telephone calls, or home visits on days 3, 2 months, and 1 year after onset. We investigated the basic information about the caregivers, including their anxiety, depression and social support conditions. We analyzed the pressure and psychological conditions of informal caregivers at different stages of stroke and analyzed its influencing factors. The data were displayed by the number and percentage of the cases; the continuous variables were described by means and standard deviation. In addition, the data were compared by Pearson correlation analysis and logistic regression analysis. (1) Within 3 days after the onset of stroke, the informal caregivers had the highest stress, the most severe anxiety and depression, the heaviest burden, and the lowest score of medical-social support. Over time, the pressure and burden of the caregivers are gradually decreasing, anxiety and depression are increasing, and social support is also increasing. (2) The stress and psychological status of informal stroke caregivers are affected by multiple factors, including the caregiver's age, relationship with the patient, patient's age, and patient's physical conditions. The stress and psychological status of informal caregivers varied in the different stages of stroke, and they were affected by several factors. Medical staff should pay attention to informal caregivers while providing care for patients. Relevant interventions may be developed based on the results to improve the health of informal caregivers and thus to promote the health of patients.

0731 Salivary Cortisol and Sleep in Grandparents Raising Grandchildren and Non-Caregiving Grandparents

Abstract Introduction Caregivers often exhibit unhealthy/dampened cortisol profiles and sleep problems due to high stress. Grandparent caregivers (GP-CG) may be particularly vulnerable with caregiving burden and age-related changes in sleep/health. Yet there is lack of empirical evidence examining baseline cortisol and reactivity in GP-CG and how they are associated with sleep. We examined differences between GP-CG and non-GP-CG in cortisol levels pre- and post-stress tasks and the moderating role of caregiving status in the relationship between cortisol and sleep. Methods 486 participants in the second wave of the 2009 MIDUS biomarkers project were characterized as GP-CG who cared for their grandchild for at least 1 year (n=63, Mage=61.80, 64% female) and non-GP-CG (n=423, Mage=62.98, 56.2% female). T-tests and multiple regressions (SPSS PROCESS) examined group differences and moderation by caregiving status in the associations between salivary cortisol (Salivette®; measured before and after Stroop and MATHTurner tasks) and sleep (work-day and non-work-day total sleep time-TST; frequency of Sleep Onset Latency problems-SOLfreq; 1-never to 5-always) over the past month. Analyses controlled for age, gender, cortisol collection time. Results GP-CG had lower baseline cortisol (M=10.35, SD=6.02) than non-GP-CG (M=12.15, SD=7.70; t(485)=2.03, p=.045). GP-CG had lower post-task cortisol reactivity (M=10.99, SD=5.83) than non-GP-CG (M=13.21, SD=7.73; t(485)=2.06, p=.040). Only non-GP-CG had a significant cortisol increase from baseline to post-task (t(1,422)=3.00, p=.001)). Caregiving status interacted with baseline cortisol (t(1, 484)=3.81, p=.04) in its association with SOLfreq (R2=.16, p=.03). Higher baseline cortisol was associated with less SOLfreq in GP-CG with no relationship in non-GP-CG. Additionally, caregiving status interacted with post-task cortisol (t(1,484)=7.79, p=.006) in its association with non-work-day TST (R2=.17, p=.04). Cortisol and TST had a positive relationship in GP-CG but a negative relationship in non-GP-CG. Conclusion GP-CG may have lower baseline cortisol and reactivity compared to non-GP-CG, consistent with previous literature examining individuals with prolonged stress compared to healthy controls. GP-CG’s reduced cortisol reactivity may be adaptive given that the positive relationship between cortisol and sleep in this group, contrary to the negative association found among healthy controls. Future research should utilize longitudinal data to determine the temporality of these relationships. Support (if any) NIA (P01AG020166, R37AG027343; McCrae, PI: R01AG061976)

Vaccine uptake in caregivers family members and patients with dementia and relationship with severity of dementia and caregiver burden: a cross-sectional study.

We cross sectionally evaluated COVID-19 and seasonal flu vaccination rates among 94 dyads consisting of informal caregiver family member and non-institutionalized patient with dementia observed in family-medicine practice in Zagreb, Croatia. COVID-19 vaccination rates in caregivers (78.7%) and patients with dementia (82.9%) were significantly higher than in general population. Caregiver and patient COVID-19 vaccination status (CVS) did not correlate. Among caregivers, seasonal flu vaccination (P = 0.004) but no other investigated factors related to caregiving or dementia severity showed significant association with CVS. Among patients with dementia, CVS was significantly associated with lower number of caregiver hours dedicated per week (P = 0.017), higher caregiver SF-36 role emotional HRQoL (P = 0.017), younger patient age (P = 0.027), higher MMSE (P = 0.030), higher Barthel index (P = 0.006), absence of neuropsychiatric symptoms of agitation and aggression (P = 0.031), lower overall caregiver burden (P = 0.034), lower burden of personal strain (P = 0.023) and lower burden of frustration (P = 0.016). Caregiving and severity of dementia-related factors significantly affect patient, but not caregiver CVS.

Insomnia Symptom Trajectory of Spouse Caregivers of Older Adults with Functional Limitations

ABSTRACT Objectives This study examined the long-term impact of spouse caregiving on insomnia symptoms, compared to propensity-score matched non-caregivers. Methods Health and Retirement Study data between 2006 and 2018 were used. Caregivers (n = 403) were respondents (aged 50+) who assisted their heterosexual spouses in performing (instrumental) activities of daily living at baseline. Non-caregivers were matched using a propensity score matching procedure based on baseline characteristics. Insomnia symptoms were measured every 4 years for both groups. Poisson mixed-effect models estimated the association between caregiver status and insomnia symptoms. Results Compared to matched non-caregivers, caregivers had similar severity of insomnia symptoms at baseline ( β caregiver = 0.018, 95% CI = −0.089, 0.124) and reported a similar yearly change rate ( β caregiver × time = −0.008, 95% CI = −0.017, 0.001). No moderation effects of care-recipients’ dementia status and social support were significant. Conclusions In this study sample, there is no evidence that spouse caregivers, specifically those who performed light duties, experience more severe insomnia symptoms than non-caregivers. Clinical implications Spouse caregiving, especially in a light-duty capacity, may not be detrimental to the caregivers’ sleep health. More data are needed regarding insomnia in spouse caregivers with heavy duties of care to fully assess the health impact of the caregiving experience.

Caregiving + Migrant Background = Double Jeopardy? Associations between Caregiving and Physical and Psychological Health According to Migrant Backgrounds in Norway.

Informal caregiving can have detrimental consequences for physical and psychological health, but the impacts are highly heterogenous. A largely ignored question is whether these impacts differ with migrant backgrounds, and whether caregiving and a migrant background combine to create double jeopardy. We explored these questions using large-scale data that allows stratification by sex, regional background, and types (inside vs. outside of household) of caregivers. We used cross-sectional 2021 data collected from two Norwegian counties as part of the Norwegian Counties Public Health Survey (N = 133,705, RR = 43%, age 18+). The outcomes include subjective health, mental health, and subjective well-being. The findings show that both caregiving, especially in-household caregiving, and a migrant background relate to lower physical-psychological health. In bivariate analysis, non-Western caregivers, women particularly, reported poorer mental health and subjective well-being (but not physical health) than other caregiver groups. After controlling for background characteristics, however, no interaction exists between caregiver status and migrant background status. Although the evidence does not suggest double jeopardy for migrant caregivers, caution is warranted due to the likely underrepresentation of the most vulnerable caregivers of migrant backgrounds. Continued surveillance of caregiver burden and distress among people of migrant backgrounds is critical to develop successful preventive and supportive intervention strategies for this group, yet this aim hinges on a more inclusive representation of minorities in future surveys.

"Nutritional Status of Formal and Informal Caregivers: A Systematic Review"

Caregivers’ nutritional status may be negatively affected due to their high emotional burden, which compromise the provision of care. The aim of this systematic review was to understand and summarize what is reported in the literature regarding the informal and formal caregivers’ nutritional status, namely 1) their current nutritional status, 2) the screening tools used and 3) the nutritional status’ related factors. A literature search was carried out on Medline, Scopus, and Web of Science from December 2021 to March 2022, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.

0729 Grandparents Raising Grandchildren: Does Caregiving Status Moderate the Relationship between Stress and Sleep

Abstract Introduction The close relationship between high stress and poor sleep is well known. Less is known whether this relationship is stronger for a certain population group who may experience more stress. Grandparents responsible for raising their grandchildren are such a vulnerable group, as increased caregiving responsibilities are associated with increased stress levels. To test this hypothesis, we examined whether grandparent caregiving status moderated the relationship between subjective stress and sleep. Methods The sample was a subset of individuals recruited in the second wave of the MIDUS biomarkers project completed in 2009 who answered the sleep, caregiving, and stress variables of interest. Participants included grandparents who reported having been responsible for the care of their grandchildren for at least 1 year (N=63, age M=61.80, 64% female) and grandparents who were not responsible for their grandchildren (N=423, age M=62.98, 56.2% female). Multiple regressions (SPSS PROCESS) examined whether caregiving status (1=yes, 0=no) moderated associations between subjective stress (Perceived Stress Scale) and sleep (subjective Sleep Onset Latency-SOL and sleep quality) over the past month. Analyses controlled for age and gender. Results Caregiving status interacted with stress (t(1, 484)=3.81, p=.04) in its association with SOL (R2=.15, p=.001). Specifically, increased stress was associated with greater SOL in caregiving grandparents and to a lesser (but not significant) extent in non-caregiving grandparents (Z =1.49, p=.13). Caregiving status interacted with stress (t(1, 484)=5.76, p=.02) in its association with sleep quality (R2=.33, p< 001). Specifically, increased stress was associated with worse sleep quality in caregiving grandparents and to a less extent in non-caregiving grandparents (Z =2.67, p=.01). Conclusion These results suggest that caregiving status may contribute to an increase in the positive relationship between subjective stress and sleep problems. Future research should utilize longitudinal and experimental methodology to determine the causality of these relationships as well as examine physiological measures of stress. In addition, studies should investigate whether addressing stress in behavioral sleep treatments may improve caregiving grandparents’ sleep. Support (if any) National Institute on Aging (P01AG020166, R37AG027343; McCrae, PI: R01AG061976)

Informal care in Huntington's disease: Assessment of objective-subjective burden and its associated risk and protective factors.

Because of the genetic transmission of Huntington's disease (HD), informal caregivers (ICs, i.e., non-professional caregivers) might experience consecutive and/or concurrent caregiving roles to support several symptomatic relatives with HD over their life. Additionally, some ICs might be HD carriers. However, whether family burden of care is associated with specific factors in HD remains poorly studied. To provide a quantitative view of the IC burden and identify associated factors. This was a cross-sectional assessment of home-dwelling symptomatic HD individuals (from REGISTRY and Bio-HD studies) and their primary adult ICs, including the HD individual's motor, cognitive, behavioral, functional Unified Huntington's Disease Rating Scale score; IC objective burden (quantification of IC time in activities of daily living, instrumental activities of daily living and supervision, using the Resource Utilization in Dementia instrument), IC subjective burden (Zarit Burden Inventory), and ICs' social economic functioning and use of professional home care. We included 80 ICs (mean [SD] age 57 [12.9] years, 60% women) in charge of 80 individuals with early to advanced stage HD (mean age 56 [12.6] years, 51% men). The mean hours of informal care time was high: 7.3 (7.9)h/day (range 0-24); the mean professional home care was 2.8 (2.8)h/day (range 0.1-12.3). This objective burden increased with higher functional loss of the HD individual and with more severe cognitive-behavioral disorders. The mean subjective burden (35.4 [17.8], range 4-73) showed a high level since the earliest stage of HD; it was associated with HD duration (mean 9.2 [4.7] years) and with aggressive symptoms in individuals (44% of cases). The burden was partially related to the multiplex caregiving status (19%). Protective factors lowering the IC burden included the absence of financial hardship (57%), a strong social network (16%) and keeping active on the job market outside home (46%). The objective-subjective burden of ICs related to changing patterns of neuro-psychiatric symptoms and mitigating environmental characteristics around the HD individual-caregiver dyads.

A Double Whammy? Psychosocial Disadvantages of Dementia Caregivers with Cancer Histories

ABSTRACT Guided by the Diathesis-Stress model, this study examined how cancer history interacted with caregiving status to determine the psychosocial functioning of dementia caregivers. This study assessed a set of indicators for psychological health and social connections among 85 spousal caregivers of persons with Alzheimer’s disease and 86 age- and gender-matched spouses of healthy controls at study entry and 15–18 months later. Results showed that dementia caregivers with cancer histories reported lower social connections relative to caregivers without cancer histories or non-caregivers with or without cancer histories, and reported lower psychological health relative to non-caregivers with and without cancer histories at two time points. The findings highlight that a history of cancer is a predisposing vulnerability factor for psychosocial dysfunctions among dementia caregivers and address gaps in knowledge about the psychosocial adjustment of cancer survivors as caregivers.

Impact of caregivers' psychological and caregiving status on recruitment, conversion, and retention in stem cell therapy trials for cerebral palsy: A prospective survey analysis.

To examine specific correlates that may affect retention outcomes of neural stem cell therapy trials in families screened for cerebral palsy. A prospective correlational study. Primary caregivers completed surveys of psychological resilience, care burden and family caregiver tasks. The overall data and differences between groups were analysed and compared. Resilience was negatively correlated with the care ability and closely related to the monthly household income and educational level of the caregivers. Factors affecting the final retention rate included the type of disease, number of combined disorders, monthly household income, primary caregivers' education level and resilience. Economic level, literacy and psychological status may affect trial retention. These findings can provide tips for preparing for subsequent screening, identification and intervention in stem cell clinical trials. The study results may provide nursing care tips to make recruitment more efficient, reduce trial costs, support patient-centredness and accelerate trial progress. The target population involves the primary caregivers of children living with cerebral palsy. However, neither patients nor the public contributed to the design or conduct of the study, analysis, or interpretation of the data, or preparation of the manuscript.

Knowledge and Practice of the Preventive and Care Methods for Diabetic Foot Among the Caregivers of Diabetic Patients in Saudi Arabia.

Background Diabetic foot syndrome is a complex and multifactorial disease process involving neuropathy, peripheral arterial disease, osteomyelitis, diabetic foot ulcer (DFU), and amputation. DFUs are a common and burdensome manifestation of the syndrome, responsible for diabetes-related morbidity and mortality. Successful management of DFU requires collaboration between patients and caregivers. This study assesses the knowledge, experience, and practices of the caregivers of diabetic foot patients in Saudi Arabia, highlighting the need for targeted interventions to improve knowledge and practices in certain subgroups of caregivers. Method The primary objective of this study was to evaluate the proficiency and practicality of caregivers who provide care to patients with diabetic foot in the Kingdom of Saudi Arabia. To accomplish this, a cross-sectional study was conducted among caregivers of diabetic foot patients who were aged 18 years or older and living in Saudi Arabia. The participants were randomly chosen to ensure that the sample was representative. The data collection process involved the distribution of a structured online questionnaire via various social media platforms. Prior to the distribution of the questionnaire, the participants were informed about the study's objectives, and their informed consent was obtained. Additionally, adequate measures were taken to ensure the confidentiality of the participants and their caregiving status. Results Among the initial pool of 2990 participants, 1023 individuals were excluded from the study due to their status as non-caregivers of diabetic patients or being under the age of 18 years. Consequently, the final sample size consisted of 1921 caregivers. The majority of the participants were female (61.6%), married (58.6%), and had a bachelor's degree (52.4%). The findings revealed that 34.6% of caregivers were attending to patients with diabetic foot, of which 8.5% reported poor foot status and 9.1% reported amputation. Caregivers reported examining the patient's feet in 75.2% of cases, and the feet were cleaned and moisturized by either the patient or caregiver. Nails were trimmed by 77.8% of caregivers, and 49.8% of them did not permit patients to walk barefoot. Moreover, knowledge of diabetic foot care was positively correlated with being female, having a post-graduate degree, having personal experience with diabetes, caring for a patient with diabetic foot, and having prior experience in treating diabetic foot. Conversely, lower knowledge levels were associated with divorced or unemployed caregivers and those residing in the northern region. Conclusion The present study highlights that caregivers of diabetic foot patients in Saudi Arabia possess a satisfactory level of knowledge and follow appropriate practices regarding foot care. Nonetheless, it is imperative to identify specific subgroups of caregivers who may require additional education and training to improve their knowledge and practices concerning diabetic foot care. The results of this study could potentially inform the design of tailored interventions aimed at reducing the significant burden of morbidity and mortality attributed to diabetic foot syndrome in the Saudi Arabian context.

Assessment of knowledge and socioeconomic status of caregivers of children with malnutrition at a district hospital in Ghana.

Malnutrition is a significant public health problem and is a major cause of morbidity and mortality in children. To assess knowledge and socioeconomic status of caregivers of children under 5 years with malnutrition at a district hospital in Ghana. Case Report forms were used to gather data in a cross-sectional study which was carried out among 189 caregivers and their children aged from zero to fifty-nine months at the Out-Patient Department clinic. Most (80.95%) children had marasmus. Sixty-two point four-two percent had severe wasting, while 35.45% had mild stunting. The rest, 21.69% had moderate stunting; while only 2.12% severe stunting. Almost all caregivers (94.71%) had heard of exclusive breast feeding as a good feeding practice but only 58.20% practiced it. Most caregivers (68.26%) had no education or only up to basic level, p=0.035. The average number of children per family was 4.8 per household (SD: 1.69) with majority of them (64.55%) having 4-6 children per family and 13.23% of them had more than 7 children per family, p=0.009. More than a third (37.04%) of the caregivers earned less than a hundred Ghana cedis (GhC 100 [US$ 19] per month and 50.26% of them earned between GhC 101 (US$ 19) and GhC 500 (US$ 96) per month. Lower level of caregivers' education and large family size were risk factors for developing malnutrition among children.

Predictive Role of Sociodemographic and Health Factors on Psychological Resilience during the COVID-19 Pandemic: A Cross-Sectional Study in Turkey

Recent global changes, including increased health risks and economic instability associated with the coronavirus (COVID-19) pandemic, highlight the need for mental health researchers to regularly and frequently monitor sociodemographic shifts. To minimise the risk of psychological complications arising from adverse events, we need to identify and understand the factors linked to psychological resilience in different populations. To this end, we collected data in Turkey during the third wave of the pandemic (June 2021). The aims were to identify how the level of perceived psychological resilience changed: (1) across sociodemographic groups (age, gender, perceived economic security, caregiver status, perceived socioeconomic status, education level, perceived social isolation, and presence of acquaintances who had contracted COVID-19); (2) across health groups (smoking status, psychological or chronic illness status, and having had COVID-19); and (3) in relation to changes in fear of COVID-19. Regression analyses showed that age, gender, economic security, socioeconomic status, and illness status were factors influencing resilience, and fear of COVID-19 was negatively correlated with resilience. Young adults, females, nonbinary individuals, a low socioeconomic status, and economically insecure groups as well as people with a psychological condition were identified as lower resilience groups. The results provide insights about the predictors of perceived psychological resilience during a global crisis and help identify vulnerable populations.

Treatment Delays in Nonsyndromic Craniosynostosis: A 30-Year Retrospective Case-Control Analysis of the Impact of Socioeconomic and Family Status on Access to Care.

Patients with nonsyndromic craniosynostosis (NSC) generally undergo corrective surgery before 1 year of age to the mitigate morbidities and risks of delayed repair. The cohort of patients who receive primary corrective surgery after 1 year and factors associated with their gaps to care is poorly characterized in literature. A nested case-control study was conducted for NSC patients who underwent primary corrective surgery at our institution and affiliates between 1992 and 2022. Patients whose surgery occurred after 1 year of age were identified and matched 1:1 by surgical date to standard-care control subjects. Chart review was conducted to gather patient data regarding care timeline and sociodemographic characteristics. Odds of surgery after 1 year of age were increased in Black patients (odds ratio, 3.94; P < 0.001) and those insured by Medicaid (2.57, P = 0.018), with single caregivers (4.96, P = 0.002), and from lower-income areas (+1% per $1000 income decrease, P = 0.001). Delays associated with socioeconomic status primarily impacted timely access to a craniofacial provider, whereas caregiver status was associated with subspecialty level delays. These disparities were exacerbated in patients with sagittal and metopic synostosis, respectively. Patients with multisuture synostosis were susceptible to significant delays related to familial strain (foster status, insurer, and English proficiency). Patients from socioeconomically strained households face systemic barriers to accessing optimal NSC care; disparities may be exacerbated by the diagnostic/treatment complexities of specific types of craniosynostosis. Interventions at primary care and craniofacial specialist levels can decrease health care gaps and optimize outcomes for vulnerable patients.

Concerns and Strengths: Caregiver Perceptions of Their Infant/Toddler with Prenatal Alcohol Exposure.

Caregiver-reported assessments provide opportunities for caregivers to share concerns and identify the strengths of their infant/toddler regarding prenatal alcohol exposure (PAE). These insights may reveal under-recognized concerns and inform a strengths-based approach to early intervention. The purpose of this study was to describe the type and frequency of caregiver-reported concerns and strengths in a sample of infants/toddlers at the time of their fetal alcohol spectrum disorder (FASD) diagnostic evaluation. Caregivers' concerns and strengths were identified in the context of two parent-report questionnaires, the Infant Toddler Sensory Profile and Child Behavior Checklist/1½-5. By using content analysis, caregivers' open-ended responses were identified, coded, and analyzed. The frequencies of all the coded concerns and strengths were counted. The data were compared across the two age groups (<2 years and ≥2 years) and caregiver status. Caregivers (n = 117) identified numerous concerns and strengths across multiple categories. The most frequently reported concerns were related to aggressive behavior, language/communication, and sensory processing. The most frequently reported strengths were related to happiness, sociability, and love. The type of concerns and strengths reported were relatively consistent across age and caregiver status. These findings reinforce the value of caregivers' perspectives and offer a reminder to practitioners that infants/toddlers with PAE and their caregivers have many strengths that can be harnessed, in addition to a range of challenges that must be addressed.

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.

Medication Decision Making in Low-Income Families of Black Children With ADHD: A Mixed Methods Study

Objectives: The purpose of this study was to explore how and why some low-income Black caregivers seek medication treatment for their children with ADHD. Methods: Using a sequential exploratory mixed method design, Phase 1 comprised an indepth case study design of seven low-income Black caregivers of children receiving medication for ADHD. Based on findings from Phase 1, the second phase involved a secondary analysis of data on Black uninsured or publicly insured children age 6 to 17 with ADHD (n = 450). Results: Factors influencing medication decision-making included child safety and volatility, caregiver mental health, caregiver aggravation, family centered care (FCC), shared decision making (SDM), sole caregiver status, and school involvement. After adjusting for ADHD severity, previous receipt of special education services and experiences of FCC and SDM were independently associated with receipt of a medication for ADHD. Conclusions: Clinicians and school personnel can intervene to decrease disparities in the treatment of ADHD.