Sole Caregiver Research Articles

Racial/Ethnicity Disparities in COVID-19 Worry for Caregivers of Adults With Intellectual and Developmental Disabilities.

This study investigated the racial/ethnic differences in COVID-19-related worry amongst family caregivers of adults with intellectual and developmental disabilities (IDD) living in Texas using the COVID-Related Thoughts and Behavioral Symptoms-Adult Version (COV-TaBS-A) questionnaire. Two hundred and six caregivers completed the survey. Compared to White caregivers, Latino caregivers were more likely to be very concerned about having enough food and supplies (adj OR 3.41, 95% CI [1.50, 7.74]) when adjusting for being that sole caregiver and using provider services. In free text questions, caregivers described feeling overwhelmed by additional responsibilities, disruptions in home health services, and concerns about their loved ones' wellness. Study findings can be used to strategize support for caregivers of adults with IDD during pandemic/emergency situations.

Sharing in caring: Family caregiving task sharing patterns for older adults in Singapore.

Research on family caregiving for older adults has largely focused on primary caregivers. We identify caregiving task sharing patterns among multiple caregivers, including family members and live-in hired workers. In addition, we investigate caregiver and care-recipient characteristics associated with these patterns. We interviewed 278 primary family caregivers of home-dwelling older adults in Singapore about who provides what assistance across three domains: activities of daily living, health and social services use, and socio-emotional and other needs. Latent class analysis was used to identify caregiving task sharing patterns. Three patterns were identified: a) 'Shared-Diverse' (39%) - multiple caregivers assisting in all three domains, b) 'Shared-Domestic' (32%) - multiple caregivers assisting with activities of daily living and socio-emotional and other needs, and c) 'Solo-Diverse' (29%) - a sole caregiver assisting in all three domains. 'Solo-Diverse' caregivers were less likely to be employed and had higher depressive symptoms relative to 'Shared-Diverse' primary family caregivers. The predominance of caregiving task sharing patterns involving multiple caregivers calls for expansion of research, policies, and programs beyond primary caregivers. Greater attention should be given to how families and live-in hired workers share caregiving tasks for older adults, and how this varies across cultural settings, especially in familial Asian societies. The findings further highlight the vulnerabilities of solo caregivers, whose employment capacity and mental health may be adversely affected by their caregiving duties. Policymakers should ensure that solo caregivers have access to support programs that address their financial and mental health needs.

Intensity of care and the health status of caregivers to elderly rural South Africans.

Informal caregivers play an indispensable role in and are often the sole source of care for older adults in low and middle-income settings worldwide. Intensive informal care predicts mortality and morbidity among caregivers in higher-income settings. However, there is limited evidence from poorer settings, including Africa countries, where caregiving is shared widely, including across generations. We therefore investigated caregivers' health status in rural South Africa. We conducted quantitative interviews with all household members and all non-household caregivers aged ≥12 (n=1012) of 106 older adults in rural Mpumalanga, South Africa. We used multivariable regression with care-recipient random intercepts to assess the relationships between four caregiving characteristics and both self-reported chronic conditions and self-reported health status, considering how caregiver age moderated each association. Over half of all caregivers reported at least one chronic health condition, despite half being aged under 40. Caregivers self-reporting the worst health status provided high hours of care. However, caregivers' health status was not significantly associated with weekly care quantity or history of caring. Those aged ≥40 who reported being a main caregiver had 52% increased odds of reporting poorer health compared to other same-aged carers (95% confidence interval: 0.99, 2.35), while having more chronic conditions was associated with being expected to act as a sole caregiver more often among caregivers aged ≤39. Greater caring responsibilities for older adults were not consistently associated with caregivers' health in a setting where poor health is common, and caregiving is spread widely. Longitudinal data is necessary to unpack possible explanations of these findings, and to determine whether intensive caregiving speeds downward health trajectories for carers.

Unveiling the silent struggle: navigating the labyrinth of mental health for parents of children with life-threatening illnesses in Pakistan.

Dear Editor, We write this letter to highlight the scarcely recognised complexity associated with the unrecognised mental health needs of parents of children diagnosed with life-threatening or life-limiting illnesses. It has been widely established that parents of children with disabilities are at an increased risk of developing variants of mental diseases when compared to parents of children without such disabilities. Parents tend to alter their lives socially to acclimatize themselves as caregivers for their children, therefore adopting a role that becomes far more labyrinthine as both parent and caregiver. (1) Mental health in general, is a subject that is insufficiently addressed in societal and scholarly contexts, specifically in Pakistan, particularly among parents. Within the scope of parents acting as sole caregivers, stress is a prominent determinant contributing to their mental health. Stress can attenuate parents’ and children’s abilities to navigate these circumstances and diminish their capacity for problem-solving and coping. (2) There are a myriad of factors that contribute to the reported prevalence of mental health-related disorders among parents of children with disabilities. Mental health remains a stigmatised entity. Such disregard impedes the delivery of healthcare towards patients suffering from mental health illnesses. There is a noteworthy hindrance in individuals facing such factors when amalgamatinge into society. When considering parental figures of diseased children, this facet serves to isolate further and reinforce such mental health illnesses. The lack of quantifiable data on anti-stigma interventions in Low and Middle-Income Countries, including Pakistan, underscores the urgent need for research. (3) Parents of children admitted to the ICU have a near-pervasive struggle with mental health and an innate inability to disclose their requirements for support. Factors barricading such disclosure should be identified and broken down through interventions, facilitating access to vital mental health support. (4) Caregivers must establish coping strategies, and remain a steady pillar of support and comfort to their child. The Keeping Hope Alive Toolkit intervention was established, which worked on fostering emotional experiences, living in the moment, remembering self and supporting social preferences, this intervention provided a template for emotional support. (5) We hope this letter can underscore how important supporting parental disclosure of unmet mental health needs is – a rampant and insufficiently reported plight in Pakistan. The ability to recognise these emotions and rectify them is not highlighted in this region but is imperative to implement, to improve the provision of healthcare to diseased children and their parents alike.

Sociocultural Factors Influence on Burden and Stress of Caregivers of Children with Epilepsy.

We evaluated stress and burden in epilepsy patient caregivers in a pediatric neurology clinic. Caregivers of 102 children with epilepsy completed the Caregivers' Assessment of Difficulty Index and a questionnaire regarding caregiver sociocultural characteristics. A multiple linear regression statistical analysis found that caregiver burden was significantly increased for those who had a second child with a chronic disease, sole caregivers and for those with children with drug-resistant epilepsy. Caregiver stress was significantly increased for caregivers with a native language other than English or French, caregivers who had a second child with a chronic disease and sole caregivers.

Caregiver and Child Mental Health During 3 Years of the COVID-19 Pandemic.

Coronavirus disease 2019 (COVID-19) lockdowns (stay-at-home orders) had significant mental health consequences in 2020 to 2021 for caregivers and children. Little is known about "postlockdown" periods in 2022 to 2023. We investigated the mental health experiences of Australian families throughout the 3 years of the COVID-19 pandemic (2020-2023), by demographic characteristics and lockdown length. A total N = 12 408 caregivers (N = 20 339 children, aged 0-17 years) completed Australia's only representative, repeated, cross-sectional, National Child Health Poll across 6 waves (June 2020-April 2023). Caregivers reported mental health for themselves (Kessler-6, poor versus not) and each child (self-rated mental health, poor/fair versus good/very good/excellent), and perceived impacts of the pandemic on own/child mental health (negative versus none/positive). Binary logistic models were fitted to predict marginal probabilities of each mental health measure by state/territory group (proxy for lockdown length), over time, adjusted for potential demographic confounders. Poor caregiver Kessler-6 was similar between genders but more common for sole caregivers, and those with a home language other than English and lower education. Poor/fair child self-rated mental health was similar between genders and increased with child age. Perceived negative impacts were more common for females and socially advantaged caregivers. Overall, negative mental health experiences increased with lockdown length, peaking with the height of lockdown in July 2021, before declining. Negative mental health experiences of Australian caregivers and children decreased during postlockdown periods of 2022-2023; however, social gradients persisted. These data can inform more precise mental health policies that enable better use of limited mental health infrastructure.

Ambulance nurses' experiences as the sole caregiver with critical patients during long ambulance transports: an interview study.

Working in rural areas involves tackling long distances and occasional lack of supportive resources. Ambulance nurses are faced with the responsibility of making immediate autonomous decisions and providing extended care to critically ill patients during prolonged ambulance transport to reach emergency medical facilities. This study aims to expose the experiences of ambulance nurses acting as primary caregivers for critically ill patients during lengthy ambulance transfers in rural regions. Fifteen nurses employed in an ambulance service within sparsely populated rural areas were subjected to semi-structured interviews. The collected data underwent qualitative content analysis. The analysis resulted in one overarching theme with two categories. The theme is 'Safety in the Professional Role,' and the two categories are 'Working in sparsely populated areas presents challenges' and 'Rare events: when routine cannot be established.' The findings suggest that working as an ambulance nurse in a rural setting poses various challenges that can be highly stressful. Delivering care to critically ill patients during extended ambulance transports requires the knowledge, experience, and careful planning of the healthcare provider in charge. The findings underscore the necessity for thorough planning and adaptable thinking when attending to critically ill patients during extended transport scenarios. The absence of supporting resources can render the task demanding. Nevertheless, participants reported an inherent tranquility that aids them in maintaining focus amid their responsibilities.

The Effects of Broken Home On the Academic Performance of Students in Tertiary Institutions in Nigeria: A Study of the Federal Polytechnic, Ilaro

The major institution for humans is the family, also known as a household or home. This study investigated how broken household might affect the academic performance of students in the tertiary institutions in Nigeria. The study was conducted among the undergraduates of the Federal Polytechnic, Ilaro, Ogun State, Nigeria. Specifically, ND II students of the School of Pure and Applied Sciences and the School of Management Studies were engaged in the study. 100 students were randomly selected from each of the Schools making a total of 200 respondents. A questionnaire was adopted to obtain information from the respondents. Using the descriptive research design, findings show that students from broken homes commonly engage in unruly and unacceptable behaviors in school and often face possibility of being rusticated or expelled from the school, Furthermore, such students suffer academic and emotional challenges and they usually perform poorly in their academic activities. it suggested that several of the elements that create poor academic performance associated with a separation, such as family’s income, trust issues and uneasiness between partners, and this ought to be curtailed in order to lessen the chance of a shattered household. Students from broken homes should be properly monitored, secured, and controlled by their supervisors and sole caregivers and parents ought to be educated on the importance of remaining married as partners in order to have a decent household. In marriage, they must persist and endure one another.

Psychosocial factors affected by burden in family caregivers of people with Alzheimer's disease.

Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer's disease. Forty-nine family caregivers of people with Alzheimer's disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer's Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR). All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001). This study demonstrates that family caregivers of people with Alzheimer's disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.

WHO’S UP NEXT? EXTENDED FAMILY CAREGIVERS OF PERSONS LIVING WITH DEMENTIA: CURRENT AND FUTURE CARE

Abstract Various societal trends and expanded family boundaries have led to a broad array of family members involved in caring for persons living with dementia (PLwD). We examined how extended family caregivers (FCG) manage their care responsibilities and how the care arrangement impacts the provision of future care for PLwD. Mixed-method data from 48 extended FCG and 56 nuclear FCG (71% White, 68% female, 63% co-reside with PLwD) revealed that 70% of extended FCG rely on informal helpers to care for PLwD. Spouses and daughters were more often sole caregivers while most sons relied on informal helpers. If no longer able to help, sisters, granddaughters, and nieces more likely foresaw moving PLwD to a care facility, whereas brothers, grandsons, and nephews anticipated another informal helper would assume their care. Extended FCG often expressed dissatisfaction with one or more informal helpers for failing to meet care responsibilities, potentially leading to unmet needs and increased risk for early nursing home placement for the PLwD. The discussion will focus on the attributes of informal helpers of extended FCG that contribute to stable or inconsistent care arrangements for PLwD, which can ultimately affect the well-being of PLwD and FCG.

우리 민법에서 이혼과 공동양육 논의의 재고

The article discusses the Supreme Court’s stance on joint parenting and the designation of co-parents as co-custodians. It argues that while some criticize the position of precedents, joint parenting may actually be detrimental to children’s welfare, and the article focuses on the positive effect of designating one parent as the sole caregiver. The target judgment reversed a decision to designate a co-parent and remanded the case to the lower court. The article analyzes the concept of joint parental authority and joint parenting, considering foreign examples and Korea’s reality. It questions whether joint parenting is the best parenting method for children’s welfare in our civil law system and suggests the significance of the target judgment and the desirable form of joint parenting. This article explores the concept of joint parenting in the Korean Civil Act, specifically the designation of co-parents and sole caregivers. The author examines how the Korean system differs from that of the United Kingdom and the United States, where parental rights and caregivers are not separated. The article argues that joint parental rights and single parenting, rather than joint parenting, are more desirable in Korea, given the practical difficulties and side effects of joint parenting. The author also suggests that expanding the right to interview negotiations for those who are not caregivers could achieve the same purpose as joint parenting. The article concludes by emphasizing the need for careful consideration when deciding on the specific circumstances under which joint parenting should be allowed.

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.

1219 INFORMAL CAREGIVERS OF PEOPLE WITH PARKINSONISM IN THE PRIME-UK CROSS-SECTIONAL STUDY

Abstract Introduction Many people with parkinsonism require care as the disease progresses with much provided unpaid by family and friends. Caring for someone can have a negative impact on physical and psychosocial wellbeing. Caregiver burden can impact ability to continue this role, which can precipitate hospitalisation or institutionalisation of the recipient. Methods In this single-site study, primary, informal caregivers, defined as those providing any care or support, were enrolled alongside the person with parkinsonism or individually. Self-reported questionnaires included the 22-item Zarit Burden Interview (ZBI), which can range from 0-88, with higher scores representing greater burden. Linear regression was used to explore the association between recipient characteristics/need and caregiver burden. Results Of 1,032 eligible patients approached, 813 participants indicated whether they had an informal caregiver (708) or not (105). 376 caregivers consented (53.1%), of whom 321 have returned questionnaires, with patient data available for 296. The median age of caregivers was 73.0 (range 27.0- 91.1 years), 237 (73.8%) female. 274 (85.4%) were the spouse/partner of the patient. 215 (67.0%) were the sole caregiver. The median time per week spent caring was 21 hours (interquartile range 7, 41 hours). 18 (5.6%) of caregivers provided 24-hour care daily and 113 (35.2%) had provided support for over 5 years. Median ZBI score was 17, (interquartile range 7-29). The care recipient’s duration of parkinsonism was associated with higher burden score (0.38 increase per year of parkinsonism; 95% CI 0.07, 0.69; p value 0.015), as was the time per week spent caring (0.16 increase for each additional hour; 95% CI 0.11, 0.20; p value &amp;lt;0.0001). Conclusions Many informal caregivers in this study were the sole caregiver and many were themselves older adults. Burden increased with increasing duration of parkinsonism and as time spent caring increased. This highlights the ongoing need to improve support for this group.

Recognize and Support Caregiving Youth in Your Care.

Recognize and Support Caregiving Youth in Your Care.

Main title - Socio-economic effects on informal caregivers of long-term hospitalized adult patients: A cross-sectional study.

A significant proportion of patients are being treated at hospitals in the government sector in Sri Lanka. Informal caregivers play a major role in taking care of hospitalized surgical patients while facing physical, social, and psychological challenges. To describe the socio-economic effects on informal caregivers of long-term hospitalized adult patients. A cross-sectional descriptive study was conducted among 202 informal caregivers of long-term hospitalized patients in a tertiary care hospital in Sri Lanka, using an interviewer-administered questionnaire. Sociodemographic assessment of both caregiver and care recipient, the health status of the care recipient, effects on social life, and economic aspect of informal caregiver were assessed. Most of the caregivers were married (n=164, 81.2%), first degree relative of the care receiver (n=139, 68.8%), employed (n=115, 56.9%) and sole caregivers (n=130, 64.4%). Four out of 5 caregivers (n=181, 89.6%) showed moderate to severe socio-economic maladaptation. Increasing age (p=0.00), marital status (p=0.00) and sole caregiving (p=0.01) are significantly associated with the level of maladaptation. Moderate to severe levels of maladaptation is present among a substantial number of informal caregivers of long-term hospitalized patients. Sole caregiving is one of the contributing factors and can be addressed by adequate formal caregivers appointed by health care authorities or from voluntary services to minimize informal caregiver burnout.

Prevalence of depression in caregivers of stroke patients in Karachi, Pakistan

OBJECTIVES&#x0D; To determine the frequency of depression in caregivers of stroke patients at a tertiary care teaching hospital in Karachi Pakistan.&#x0D; METHODS &#x0D; A cross-sectional study was conducted among caregivers of stroke, who were recruited from the Aga Khan University Hospital Karachi Pakistan, between January 2018 to October 2018. Data was collected through the Urdu Hamilton rating scale for depression (HAM-D-U) and it was analyzed using descriptive and inferential statistics.&#x0D; RESULTS&#x0D; A total of 136 caregivers participated in the study. Among them, 44.1 % were male and 55.9% were female. The mean age of caregivers was 45.38 ± 10.33 years. Using the HAM-D-U scale, depression was present in 64 (47.1%) caregivers. Out of them (n=64), 46 (33.8%) caregivers had mild depression whereas 18 (13.2%) had moderate depression. Depression was found to have a significant relationship with the age of the patient (p=0.002), education level of caregiver (p= 0.012), employment status of caregiver (p=0.012), being a sole caregiver (p=0.039), and monthly family income (p=0.016).&#x0D; CONCLUSIONS&#x0D; Caring for patients with neurological disorders is highly challenging and demanding. The need for this role may arise unexpectedly in one’s life; leaving little space for adjustment and coping. Depression itself can be very paralyzing for the sufferer especially if moderate to severe in intensity. Depression in stroke caregivers can be missed as patients are the center of a clinical visit. Hence, strategies should be designed and reinforced to screen patients and caregivers for depression along with a pathway for an easy and timely referral.

Shared Care Networks Assisting Older Adults: New Insights From the National Health and Aging Trends Study.

Caregiving research often assumes older adults receiving care have a primary caregiver who provides the bulk of care. Consequently, little is known about the extent to which care responsibilities are shared more evenly within a care network, the characteristics associated with sharing, or the consequences for meeting older adults' care needs. We analyze a sample of U.S. older adults receiving care from the 2011 National Health and Aging Trends Study (n = 2,398). Based on variables reflecting differences in care hours, activities, and care provided by the whole network, we create network typologies for those with two or more caregivers (n = 1,309) using K-means cluster analysis. We estimate multinomial and logistic regression models to identify factors associated with network type and the association between type and unmet needs. We conduct analyses overall and for older adults living with and without dementia. Analyses reveal four network types: Small, low-intensity shared care network (SCN); large, moderate-intensity SCN; small, low-intensity primary caregiver network (PCN); and moderate-sized, high-intensity PCN. Among all older adults receiving care, 51% have a sole caregiver, 20% have an SCN with no primary caregiver, and 29% have a PCN. Among older adults with dementia receiving intense care, unmet needs are lower among those with an SCN (vs. PCN). Findings underscore that the primary caregiver construct, although common, does not apply to a substantial share of care networks. Moreover, having an SCN when needs are high may be beneficial to meeting older adult's needs.

Who's Helping Whom? Examination of Care Arrangements for Racially and Ethnically Diverse People Living With Dementia in the Community.

Objective: To address notions around care arrangements for Black and Hispanic people living with dementia (PLwD), the study examined if racial and ethnic differences exist for community-dwelling PLwD. Methods: Using cross-sectional data from the 2015 National Health and Aging Trends Study, we used Pearson's chi-square and mean comparison to examine differences among a sample of n = 863 community-dwelling White, Black, and Hispanic older PLwD. Results: Black PLwD were less likely than White PLwD to use paid help (26.8% vs. 32.6%), but Hispanic PLwD were most likely to use paid help (46.2%, p < 0.05). Black and Hispanic older adults were more often receiving help from a child (65.8% and 72.2%, respectively; p = 0.01) or other family member (40.3% and 31.0%, respectively; p < 0.01). Discussion: Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Caregiving supports should be intentional in centering services on the family, not a sole caregiver.

Motherhood in Alternative Detention Conditions: A Preliminary Case-Control Study.

Many women in detention are mothers and often the sole caregivers of their children. Italy, as most European countries, allows mothers to keep their children with them in detention, with the aim of preserving the fundamental bond between mother and child. Since prison does not seem to provide a good environment for the child’s growth, there are different alternative residential solutions, such as Group Homes. The aim of this preliminary study was to explore the differences between mothers living in detention through alternative measures with their children and mothers who are not detained regarding parenting stress, child behavior from the parent’s perspective, and maternal attachment. Twelve mothers were enrolled in this study, divided equally between the detained and the control groups. Both groups’ participants completed a three-questionnaire battery in order to assess parenting stress, child’s behavior, and maternal attachment. The analyses of variance showed significant differences between the two groups, with the detained group reporting higher scores than the control group in almost all the subscales of parenting stress. The results highlighted that imprisoned mothers might experience more stress than the general population. There is a need to design intervention programs to support parenting in detention.