Caregiving Relationship Research Articles

The level of antiretroviral therapy (ART) adherence among orphan children and adolescents living with HIV/AIDS: A systematic review and meta-analysis.

Many children and adolescents living with HIV have ended up as orphans. Due to HIV taking away their parents leaves them deprived of their most important social network and support, which predisposes them to poor adherence to antiretroviral therapy (ART). Various studies have shown poor adherence to ART among orphaned children and adolescents. This systematic review and meta-analysis, therefore, aims to determine the level of ART adherence among orphaned children and adolescents living with HIV/AIDS. This PROSPERO registered review (CRD42022352867) included studies from PubMed, Google Scholar, Scopus, Web of Science, Africa Journal Online, and selected HIV/AIDS journals from data inception to June 01, 2022. We included articles published in all languages that report the prevalence of adherence to ART among children and adolescent orphans (single parent orphans and/or double orphans) living with HIV/AIDS. We excluded qualitative studies, case studies, opinion papers, and letters to editors. We used the random-effect model to calculate the pooled prevalence of ART adherence based on the highest prevalence provided by the various methods in a particular study. We used the Joanna Briggs Institute Appraisal tool for the prevalence study to evaluate for risk of bias in the included studies. The Egger's test was used to assess small study effects. Out of 1087 publications identified from the various databases, six met the selection criteria. The included six studies had a total 2013 orphans living with HIV/AIDS. The pooled prevalence of ART adherence was 78∙0% (95% Confidence Interval: 67.4-87.7; I2 = 82.92%, p<0∙001) and ranged between 7∙6% and >95%, using one of the following methods: pill count, caregiver's self-report, clinical attendance, and nevirapine plasma levels (above three μg/mL). The factors associated with adherence were pill burden, caregiver involvement, stunting, and caregiver relationship. There was a high level of heterogeneity in the finding. Approximately four fifth of orphan children and adolescents living with HIV/AIDS adhere to ART. Strategies to improve adherence among this group should be prioritized, especially among the double orphaned children and adolescents.

Support Seeking Tactics Used by Family Caregivers of Relatives With Dementia: Influences on Network Support and Caregiving Burden

Social support for family members who care for a relative with dementia can mitigate caregiving burden. Yet, in that evidence points to these caretakers as often experiencing isolation and loneliness while providing dementia-related care, a need remains to better understand factors contributing to their adverse support experiences. Accordingly, this study applies sensitive interaction systems theory (SIST) to examine how caregivers’ direct versus indirect support-seeking behaviors relate to the quality of support responses they receive from a member of their social network. Associations between network support responses and caregiving burden are also investigated. Family caregivers ( n = 411) completed a Qualtrics survey. Results from path analysis indicated that family caregivers’ direct support seeking was related to supportive responses from a network member, while their indirect tactics to gain assistance predicted unsupportive reactions. Supportive and unsupportive network responses to family caregivers' support seeking were both related to greater caregiving burden. Additionally, indirect support seeking predicted greater caregiving burden, while this relationship was also partially mediated by unsupportive network responses. Findings highlight the utility of marriage and family counseling efforts to help family caregivers identify and practice strategies for communicating their varying dementia-care support needs to others while also managing unconstructive responses shared within their social network. Caregivers may additionally benefit from counseling to help them to develop coping skills beyond support seeking.

“There’s so much history”: shared parenting dynamics in kinship families

ABSTRACT Shared parenting, when adults collaborate in childrearing, is a practice of interest for children in out-of-home care. Yet, little is known about its feasibility and outcomes for kinship families who have preexisting relationships with birth parents. This article shares qualitative results from focus groups that explored participants’ experiences and attitudes toward shared parenting. The sample comprised 25 kinship caregivers and 34 child welfare professionals. Findings revealed that shared parenting within kinship families is often less feasible than desired. This article identifies barriers and facilitators of shared parenting, offers a shared parenting typology, and explores implications for policy and practice.

‘If I don’t take care of me, then I can’t be there for others:’ a qualitative study of caregiving relationships among older women living with HIV

Objective The population of women ages 50 years and older living with HIV is increasing. Yet, little is known about the care networks that older women living with HIV (OWLH) use to manage their health. The goal of this study was to explore the caregiving and care receiving relationships among OWLH and how these relationships impact HIV management. Methods OWLH aged 50 years and older were recruited from clinics and community-based organizations across the U.S. We conducted semi-structured, in-depth phone interviews and performed content and thematic analysis on transcripts. Results Participants (N = 23) were on average 60 years old and had been living with HIV for an average of 23.7 years. Participants 1) relied on diverse care networks; 2) were caregivers for grandchildren and parents; 3) had pride and joy in being caregivers; and 4) were highly proactive in their own HIV management. Care networks promoted self-love and acceptance. However, concerns about aging with HIV were still highly prevalent. Conclusion Being a caregiver and care recipient are sources of meaning and strength to help OWLH manage HIV. Public health programs should consider engaging both OWLH and their care networks in healthcare discussions and educational efforts.

Social determinants of health predict health outcomes following pediatric allogeneic hematopoietic stem cell transplant.

Pediatric hematopoietic stem cell transplantation (HCT) is an intensive medical procedure that places substantial financial and logistical burdens on families and is associated with significant health risks, such as graft-versus-host disease (GVHD), and infections. The influence of the social determinants of health (SDoH) on outcomes following pediatric HCT is understudied. This study aimed to examine whether SDoH predicts outcomes following pediatric HCT. Data were collected from 84 children who received HCT (Mage =5.8years, SD=3.7) and their primary caregiver. Detailed demographic information was collected from caregivers at baseline, and child health information was extracted from the electronic medical records. Multivariate logistic regression was used to examine the association between SDoH and health outcomes within a 24-month period following pediatric HCT. After controlling for malignancy as reason for transplant and donor type, lower family income predicted the incidence of chronic GVHD. Neighborhood deprivation, total family income, public health insurance, caregiver relationship status, caregiver educational attainment, and perceived family financial difficulties did not predict acute GVHD or the number of infections. Total family income is a simple family indicator of SDoH that predicts chronic GVHD after pediatric allogeneic HCT. These findings provide further support for the importance of screening of child and family SDoH risks to ensure that fundamental needs can be met to mitigate potential health disparities for up to 2years following pediatric HCT.

Who Cares? Unpaid Caregiving by Sexual Identity, Gender, and Partnership Status Among U.S. Adults

Recent scholarship indicates that sexual minority adults have higher caregiving rates than heterosexuals and that women are more likely to be caregivers than men. However, little research has addressed how gender and sexuality intersect in shaping caregiving status. This study uses data from the Behavioral Risk Factor Surveillance System and aggregates a probability-based sample of adults living in 36 U.S. states between 2015 and 2021. We examine who provides care among adult heterosexual, lesbian, gay, and bisexual men and women. Results reveal that women are more likely to be caregivers than men, but only among heterosexuals. We find little variation in caregiving by sexuality among women, but bisexual men are more likely than heterosexual men to be caregivers; the latter result appears to be driven by unpartnered, bisexual men. Lastly, we contextualize caregivers’ experiences and reveal selected descriptive differences in patterns of care recipient–caregiver relationships across gender and sexual identity groups. Our findings advance understanding of caregiving and changing family ties in an era of population aging and increasing diversity in sexual identities.

Insights Into Informal Caregivers' Well-being: A Longitudinal Analysis of Care Intensity, Care Location, and Care Relationship.

This study investigates the psychological well-being of informal caregivers over time. It identifies the thresholds (or "tipping points") of caring intensity at which caregiving is associated with lower psychological well-being, and how this varies by care location and caregiver-care recipient relationships. It also examines how caring location and relationship are linked to informal caregivers' psychological well-being while controlling for caring intensity. Waves 1-18 (1991-2009) of the harmonized British Household Panel Survey and Waves 1-8 (2009-2017) of the U.K. Household Longitudinal Study were analyzed. Psychological well-being was measured using the General Health Questionnaire (GHQ)-12 score. Care intensity was measured by the weekly hours of care provided. Fixed-effects estimators were applied to the GHQ-12 score of caregivers across different care intensities, caring locations, and caring relationships. All levels of informal care intensity are associated with lower psychological well-being among spousal caregivers. The thresholds to well-being are 5 hours per week when caring for a parent, and 50 hours per week when caring for a child (with a disability or long-term illness). Caring for "other relatives" or nonrelatives is not negatively associated with psychological well-being. The thresholds are 5 hours per week for both coresident and extraresident caregivers. Extraresident caregivers experience better psychological well-being compared to coresident caregivers, given relatively lower weekly care hours. Caring for primary kin (especially spouses) is linked to lower psychological well-being compared to other caregiving relationships, regardless of care intensity. Policy and practice responses should pay particular attention to spousal caregivers' well-being. Caregiving relationship has a stronger association with the caregiver's well-being than care location.

Level of Distress Experienced by Glioblastoma Multiforme Patients and Caregivers in Relation to their Medical Education Background: A Qualitative Study

BACKGROUND: Glioblastoma multiforme (GBM) is a primary brain tumor with extensive infiltration of surrounding brain tissue and a high rate of recurrence, with an average survival of 13–16 months. Due to the rapid course of the disease, multimodality treatment, and poor prognosis, both the patients and their caregivers will face significant psychological distress. Identification of the types and severity of distress is crucial to control morbidity during treatment. AIM: This study aims to define the level of distress experienced by patients and their caregivers during the treatment period by considering their medical education background. At the time of publication, this type of study is unique and has never been done before. MATERIALS AND METHODS: This study was conducted at the Neurosurgery Outpatient Department of Mochtar Riady Comprehensive Cancer Center Siloam Hospital Jakarta. Patients with GBM and their caregivers were recruited during the early stages of radiation treatment (T1) and the follow-up chemotherapy (T2) and were assessed using the distress thermometer (DT) and National Comprehensive Cancer Network (NCCN) problem checklist followed by in-depth interviews. Participants were divided into two groups based on medical education background. Significant distress is defined as DT score &gt;4. RESULTS: Data from four pairs of patient-caregivers are collected during the early stages of T1. Two pairs of Patient-Caregivers without medical educational background (P-C non-D) are included later during T2. From T1, patients and caregivers with medical education (P-D) are higher than those without medical education (P-D &gt; P-non D; C-D &gt; C-non D). Another comparison shows that P-D is higher than C-D. In contrast, P-non D is lower than C-non D. Based on the time data collected, it shows DT: P-non D T2 &gt; P-non D T1, but there is no difference between T2 and T1 in the caregiver’s group: C-non D T1 = C- non D T2. From the NCCN problem checklist, it is known that they attribute their distress mostly to physical problems. CONCLUSION: The physical and mental changes experienced by patients cause distress for patients and their caregivers. Knowledge of disease and treatment possessed by patients or caregivers helps them deal with GBM and the entire course of treatment.

The Social Ecology of Caregiving: Applying the Social-Ecological Model across the Life Course.

Family caregivers provide care to people with disabilities, as well as ill and older adults, often with little to no outside assistance from the formal long-term care system. They are the backbone of long-term care, and it is a misconception that the majority of people institutionalize disabled people and older adults in the United States. Youth caregiving is under-examined in the field of public health and is in need of theoretical and practical attention. Building upon the work of Talley and Crews and Bronfenbrenner, we aim to broaden the scope of the discussion around caregiving through the application of the social-ecological model (SEM) to inform research and practice. This paper picks up where they left off, digging deeper into the ecological model to reimagine research, policy, and practices related to youth and young adult caregivers that are rooted in this framework. This application highlights care as embedded in social relations while allowing for an exploration of the ways structural barriers impact the caring unit. Looking holistically at the unit, rather than individuals as service users, provides an opportunity for understanding the interconnectedness of those giving and receiving care. It does so by rendering visible the interdependence of the caring unit, and the myriad structures, which bear down on care at the individual and household levels. This approach runs counter to dominant thinking, which focuses exclusively on the individuals involved in caregiving relationships, rather than considering them as interdependent units of care. This paper provides an analytic contribution, utilizing a narrative composite vignette based on literature and previous research.

Better Communication for Better Management of Persons with Hemophilia: Results from a Patients'-Clinicians' Project to Address the New Therapeutic Landscape.

Applying the Delphi method, this study aims at characterizing the perceptions and needs of physicians, individuals with hemophilia, and their caregivers in relation to the management of routine visits during regular follow-ups. A single structured questionnaire, prepared by an advisory board, was administered to 139 participants, comprising hemophilia treaters, patients and caregivers, during the period from May to June 2023. Agreement (defined following the Delphi method as developed by RAND Corporation) was reached on several topics. The Principal Component Analysis methods identified the four most relevant areas where consensus was reached among the interviewees, underscoring the necessity for in-depth discussions during routine visits: (1) medical aspects related to symptoms, life-limitations, pain, etc.; (2) non-medical related aspects (ambitions, lifestyle, network, etc.); (3) logistical-organizational aspects (home-hospital distance, alternative modalities of communication); and (4) visit duration and telemedicine integration. The results of both the Delphi and Principal Component Analysis underline that the care of individuals with hemophilia extends beyond merely prescribing drugs or treatment regimens. Instead, it necessitates consideration of numerous variables from both therapeutic and non-therapeutic domains, all of which are deemed important for the holistic management of the individuals. As a result, these aspects are routinely discussed and addressed during visits.

The Role of African Spirituality in the Provision of Kinship Care in the South African Context

This article focuses on understanding the role played by African spirituality in the provision of kinship care in the South African context. African traditional spirituality was found to be an important factor underpinning kinship care and its provision, especially in rural African communities. The study was conducted using a qualitative research methodology. Twenty-one (21) participants, who were kinship caregivers, were recruited using purposive non-probability sampling methods. The study found that African spirituality helped them to preserve both their cultural and personal identity. Furthermore, through African spirituality, children and youth in kinship care receive psychosocial support and experienced a positive upbringing through their kinship caregivers and tribal community. African kinship caregivers were found to offer kinship care as a spiritual duty to help children and youth who need care and protection in the absence of their birth parents.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis

ABSTRACT Purpose The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. Methods We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. Results Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. Conclusions These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

Navigating risk: Young women's pathways through the care, education and criminal justice systems

AbstractThe criminalization of young women in care remains an important practice and policy issue in England despite 2018 national guidance and the subsequent development of local authority protocols to reduce the criminalization of care‐experienced young people. This paper contributes to the emerging research on young women whose behaviour challenges professionals, through secondary analysis of case file data and narrative interviews with 24 care‐experienced young women from a national project on care and offending. Analysis focused on young women's pathways through the care, justice and education systems and identified five domains within young women's lives where available risk or resilience factors were significant in directing young women towards prosocial opportunities, to new types of victimization or to criminalization and offending. These domains consisted of placements and caregiver relationships; partner relationships; pregnancy and motherhood; participation in education; and the transition to adulthood through leaving care. The paper concludes with implications for practice for professionals working with young women, in particular emphasizing that how the care, justice and education systems respond to young women can contribute to negative pathways or transform them.

Finding a secure base: Exploring children’s attachment behaviors with professional caregivers during the first months of daycare

Recent decades have seen a major rise in demand for daycare services for children aged 0 to 3 years, and this has increased research interest in the child-professional caregiver relationship at daycare centers: How does the relationship between children and their new caregivers develop over time? How long does it take for children to settle in at daycare? What variables can influence the settling-in process? These questions are all of the utmost salience and bear crucial implications for children, parents, and daycare practitioners. In this study, we set out to explore the relationship between infants and their new caregivers over the first two months in daycare, using the Professional Caregiver Attachment Diary. The study involved seven Italian daycare centres and 55 professional caregivers, who observed 148 children (M=17.8 months). The children’s attachment behaviors were assessed at three time-points: when the children started attending daycare (T1), one month later (T2), and two months later (T3). We found that positive attachment behaviors (Secure and Non-Distressed) increased over time, whereas insecure behaviors (Avoidant and Resistant) decreased. Most of the change took place during the first month. Furthermore, children who had attended more daycare more regularly (with fewer days of absence) displayed fewer avoidant behaviors and a more rapid decrease in resistant behaviors than did children who were absent more frequently. The findings suggest that the PCAD may be usefully deployed to observe and analyze children while they are settling into a new daycare setting, especially in relation to their exploratory behaviors.

Reporting perceived capability, motivations, and barriers to reducing treat feeding amongst dog and cat caregivers

Obesity remains a significant concern for dogs and cats, and reducing or eliminating treats is commonly recommended as a strategy for weight management. Caregivers can struggle with adherence to such dietary recommendations. Previous research suggests caregivers are reluctant to reduce treats but there is limited understanding of the underlying factors contributing to these behaviours and decisions. The objective of this study was to explore caregivers’ motivations and barriers to reducing treat feeding, and their reported capability to do so. An online questionnaire including multiple choice and Likert scale questions was disseminated to dog and cat caregivers (n=1053) primarily from Canada and the USA from September to November 2021. Caregivers commonly expressed a wide range of motivations to reduce treat feeding with their pet, though barriers to reducing treat feeding were less defined. Changing their pet's routine was a reported barrier by more than 30% of respondents and was predictive of caregivers finding reducing treat giving to be difficult (OR=1.67, p=0.017). Results from multivariable logistic regression also revealed that caregivers who consider their companion animal to be obese as more likely to perceive reducing treats to be difficult. The results highlight the role of treats in the relationship and routine of caregivers’ and their pets, and the importance of considering the individualised needs and circumstance of the caregiver and pet in veterinary discussions surrounding reducing treat feeding. Identifying these perspectives can improve self-efficacy with veterinary nutrition recommendations surrounding treats.

Correlation of behavioral and psychological symptoms of dementia with patients’ sociodemographic &amp; clinical details and caregivers’ distress

Background: Behavioral and psychological symptoms of dementia (BPSD) influence dementia care significantly. BPSD can be affected by factors related to the patient’s illness and socio-cultural background. Aim: This study aimed to find a relationship between BPSD with patients’ socio-demographic and clinical profiles and their caregivers’ distress in a tertiary care center. Materials and Methods: In this hospital-based cross-sectional study, the purposive sampling technique was used to select 100 dementia patients. A comprehensive record of socio-demographic and clinical details was made on a self-prepared semi-structured data sheet. The Neuropsychiatric Inventory Questionnaire was the principal tool to find the BPSD and related caregivers’ distress. Results: The sample comprised predominantly Hindu (91%) male patients (66%) with Alzheimer’s dementia (76%) coming from rural backgrounds (74%) and joint familial systems (96%), with a mean age of 71.77 ± 7.41 years. Patients’ main caregivers were their children/children-in-law (65%). The severity of an overall BPSD and its variable individual domains were directly related to the duration of dementia, patients’ age, their cognitive decline, and related decline in activities of living, as well as their caregivers’ distress. In comparison to Alzheimer’s disease patients, those with other dementia types had more impairment in cognitive functions and activities of daily living and they had a higher number and severity of BPSD. Conclusion: The advancing age, increased duration of dementia, and decline in cognition and related activities of daily living of the patients, as well as their caregivers’ distress, are important correlates of BPSD. The findings are essential for the better management of dementia patients.

A comparison of adult-child and spousal cancer caregivers' participation in medical decisions.

Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type.

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.

Supplemental Material for Efficacy of the Residential Care Transition Module: A Telehealth Intervention for Dementia Family Caregivers of Relatives Living in Residential Long-Term Care Settings

Supplemental Material for Efficacy of the Residential Care Transition Module: A Telehealth Intervention for Dementia Family Caregivers of Relatives Living in Residential Long-Term Care Settings

Social Support Networks Among Black Caregivers of Persons With Memory Problems.

Positive social support can predict health outcomes in populations that experience significant burdens, such as minority caregivers. The purpose of the current study was to detail the social network (SN) of 36 Black family caregivers (FCGs) for persons with memory problems (PWMP) and examine differences in SN support depending on FCG gender and relationship to the care recipient. Participants were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and the local community. FCGs were categorized into adult children (ACH), grandchildren and in-law children, and friends and other relatives. FCGs described the amount of adequate support they receive for different types of support from their SN. Female FCGs reported higher levels of support overall, with the largest effect sizes including social (d = 0.63), emotional (d = 0.64), and financial (d = 0.38) support. The largest effect size comparison of caregiver relationship type was in social support, with the ACH group reporting the lowest levels of adequate social support compared to the other two groups (d = 0.48). Findings suggest that different types of Black FCGs face unique challenges depending on their gender and familial relationship to the care recipient. [Journal of Gerontological Nursing, 50(1), 22-29.].