Caregiver Well-being Research Articles

An examination of caregiver burden and contributing factors in cases of congenital microtia deformity.

This study aimed to assess the burden and influencing factors among primary caregivers of children with congenital microtia. A total of 153 primary caregivers of children with congenital microtia who underwent auricular reconstruction surgery at a tertiary A-grade hospital in Xi'an between October 2019 and August 2022, were recruited using convenience sampling. The Zarit Caregiver Burden Interview (ZBI) was employed to evaluate caregiver burden. While convenience sampling allowed for the practical recruitment of participants, its limitations include potential selection bias, which may affect the generalizability of the results. The mean total ZBI score was 30.07 ± 12.29. Among the participants, 26 caregivers (17.0%) reported no burden, 102 caregivers (66.7%) reported mild burden, 22 caregivers (14.4%) reported moderate burden, and 3 caregivers (2.0%) reported severe burden. Multivariate regression analysis identified several significant factors influencing caregiver burden, including the location and severity of the lesion, educational level, method of medical payment, monthly household income, communication with others about the child's condition, caregiver self-blame or guilt, and family support (all P < .05). Primary caregivers of children with congenital microtia face substantial burdens, emphasizing the need for targeted healthcare interventions. Strategic approaches are essential to address the psychological, social, and financial challenges they encounter. Future research should focus on longitudinal studies and interventions to enhance caregiver well-being and patient outcomes. However, caution is advised when generalizing these findings due to the sampling limitations.

Caregiving burden, social support, and psychological well-being among family caregivers of older Italians: a cross-sectional study

ObjectivesThis study aimed to identify factors affecting the psychological well-being of family caregivers of dependent older adults in Italy. Understanding these variables is essential for designing interventions to prevent negative outcomes in at-risk caregivers. The research explored how varying levels of caregiving burden and types of perceived social support influence psychological well-being.MethodsA cross-sectional study was conducted among 387 family caregivers of older adults in the Marche region (Italy) between November 2019 and March 2020. Data were collected via a structured questionnaire assessing psychological well-being (WHO-5 Well-Being Index), caregiving burden, and social support (COPE Index). Statistical analyses were performed using Jamovi software, with a significance threshold set at p &amp;lt; 0.05.ResultsA significant negative correlation was found between caregiving burden and psychological well-being [r (364) = − 0.540, p &amp;lt; 0.001], with caregiving burden being a significant predictor of psychological well-being reduction (R2 = 0.290; F = 150, p &amp;lt; 0.001). A threshold value of 2 (on a 1–4 scale) was identified, where caregiving burden predicted a significant reduction in psychological well-being. Conversely, greater perceived social support was positively correlated with better psychological well-being [r (357) = 0.348, p &amp;lt; 0.001] and was a significant predictor of it [R2 = 0.121; F = 49.2, p &amp;lt; 0.001]. Support from social and health services had the most notable impact on psychological well-being. Moreover, social support mitigated the negative impact of caregiving burden on psychological well-being.ConclusionThe study confirms that high caregiving burden adversely affects caregivers’ psychological well-being, while social support plays a protective role. These findings highlight the need for interventions focused on reducing caregiving burden and enhancing support systems for family caregivers.

Caregiver burden, religious coping, and spiritual well-being among caregivers of elderly stroke patients and predictors affecting spiritual well-being.

Stroke is a disease that affects the arteries leading to and within the brain. Stroke usually creates a range of disabilities such as physical deficits and difficulty in performing daily activities. These long-term needs and the continuous caregiving sequence affect the care burden and spiritual well-being of caregivers. The correlational study population consisted of caregivers of stroke older patients (N = 100). Burden Interview Scale, Spiritual Well-Being Scale and Religious Coping Scale were used. Descriptive analyses, independent sample t-test, one-way analysis of variance, correlation, regression analyses were used to evaluate the data. The mean age of caregivers was 48.38 ± 13.52 years. The score of Burden Interview Scale was 31.41 ± 15.13 (light/moderate), Negative Religious Coping was 7.39 ± 3.17 (moderate), Positive Religious Coping was 24.30 ± 4.34 (high), and Spiritual Well-Being was 21.65 ± 6.73 (low). There is a significant relationship between Burden Interview and Negative Religious Coping (r = 0.274; P = 0.006), Burden Interview and spiritual well-being (r = -0.563; P = 0.000), and spiritual well-being and positive religious coping (r = 0.228; P = 0.026). The predictors that affect the spiritual well-being of caregivers were found to be Burden Interview (β = -0.571) and Positive Religious Coping (β = 0.181) (P < 0.05). Nurses play an important role in increasing the spiritual well-being levels and religious coping behaviours of caregivers. Nurses should communicate empathically with caregivers, understand their feelings, and provide emotional support.

Assessment of the sentiments expressed by traumatic brain injury patients and caregivers: A qualitative study based on in-depth interviews

IntroductionTraumatic Brain Injury (TBI) is a significant public health concern that causes death, disability, and economic burden. Its repercussions affect physical, cognitive, emotional, and behavioral aspects of long-term care needs. Despite improvements in communication among multidisciplinary teams, the management of TBI remains fragmented. ObjectiveThis study aimed to assess patients and caregivers’ experiences through sentiment analysis. Materials and methodsA qualitative cross-sectional study utilized structured topic modeling (STM) to analyze in-depth interview data. The study involved 29 patients with TBI and 27 caregivers in Madrid (Spain), using a survey design. The interviews were conducted, transcribed, and coded independently over 5 months. Sentiments such as anticipation, fear, and emotional concerns were analyzed using three dictionaries. The STM analysis identified four key concepts: desire for independence, potential improvement, need for injury information, and psychological consequences. STM diagnostic graphs were used to determine the number of topics relevant to the evaluation of patient and caregiver concerns. Furthermore, an analysis was conducted across four topics. ResultsThe average age of the patients was 44.2 ± 14.9 years (69 % males). Regarding TBI severity, 59 % of patients had severe TBI, whereas the remaining 41 % had experienced moderate TBI. Among the caregivers, the majority were parents (30 %), partners (24 %), or siblings (24 % each). Among the 51 participants, sentiments were analyzed using three dictionaries. While there were no significant age differences (Z = 0.24, p = 0.815), the STM model was adjusted for significant sex differences (p = 0.017) between patients and relatives. Anticipation and fear prevailed in both groups, highlighting the shared emotional patterns. DiscussionThe analysis of diagnostic graphs indicated the optimal number of topics for evaluation, emphasizing key concerns across different phases of TBI. Patients' main worries shifted from physical symptoms to limitations in daily life and independence. Caregivers highlighted the importance of staff interactions, misinformation challenges, and the need for psychological care. ConclusionKey patient concerns, including dependency on daily activities, limitations in autonomy, and caregiver burden, emphasize crucial areas for enhancement in multidisciplinary treatment. Moreover, the lack of long-term psychological support is a significant barrier to optimal patient and caregiver well-being.

Perceived partner responsiveness alters the association between marital distress and well-being in dementia spousal caregivers

Caregivers for spouses with Alzheimer's disease and related dementias (ADRD) experience drastic changes in the marital relationship that may put them at risk for worsening well-being. Perceived partner responsiveness, or feeling cared for, understood, and appreciated by one's spouse, may help mitigate these effects. In this study, we investigated the associations between marital distress, perceived partner responsiveness, and psychological and physiological well-being indicators among ADRD spousal caregivers. MethodA sample of 161 caregivers provided blood samples and completed self-report measures of marital distress, perceived partner responsiveness, and depressive symptoms. We tested hypotheses in our sample cross-sectionally based on two theoretical frameworks. ResultsTesting the marital discord model of depression, caregivers who reported greater marital distress also reported more depressive symptoms, and this association was stronger as participants reported lower perceived partner responsiveness. Caregivers who reported greater marital distress exhibited elevated proinflammatory cytokine production by in vitro lipopolysaccharide (LPS)-stimulated peripheral blood leukocytes at low levels of perceived partner responsiveness, but not mean or high levels. Testing the vulnerability-stress-adaptation model, caregivers who reported more depressive symptoms also reported greater marital distress. Further, caregivers who exhibited elevated LPS-stimulated proinflammatory cytokine production reported greater marital distress at mean and high levels of perceived partner responsiveness, but not low levels. These patterns of results held even when accounting for the dementia stage and reported hours of caregiving per day. DiscussionThis study's findings contribute to the body of research examining interpersonal factors that shape health and well-being among the caregiver population.

Factors Affecting Psychological Well-Being of Female Caregivers to Children with Disabilities: A Conceptual Paper

Factors Affecting Psychological Well-Being of Female Caregivers to Children with Disabilities: A Conceptual Paper

Quality of life and subjective well-being of children and caregivers at different stages of allogeneic hematopoietic stem cell transplantation

Quality of life and subjective well-being of children and caregivers at different stages of allogeneic hematopoietic stem cell transplantation

Conceptual framework for the health and well-being of caregivers of HIV/AIDS orphans in North West Province, South Africa

BackgroundThe human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) is an epidemic that continues to increase the burden of care among caregivers of HIV/AIDS orphans. Research has confirmed that HIV/AIDS orphans’ caregivers perform their duties in an unconducive environment. Consequently, this negatively impacts their health leading to inability to discharge caregiving duties effectively. After carefully considering the caregivers’ predicament, the researchers found it imperative to develop a conceptual framework for the North West Province as this province lacks a conceptual framework that addresses the health and well-being of caregivers for orphaned children.MethodsAn exploratory, descriptive and contextual design was used in the study. The population for this study were HIV/AIDS orphans’ caregivers and ward-based professional nurses who also served as outreach team leaders. Non-probability purposive sampling technique was used to select participants for this study. Data was collected using individual semi-structured interviews, focus groups, and field notes. Six steps of thematic analysis were adopted to analyze collected data. The practice-orientated theory by Dickoff, James, and Wiedenbach guided the development of the conceptual framework. These six steps include the agent, recipient, context, procedure, dynamics, and terminus.ResultsThe study findings include home visits, health education, support during disclosure, routine monitoring of blood and growth, mobilization of support systems and resources, and utilization of government services.ConclusionThe conceptual framework seeks to improve the health and well-being of HIV/AIDS orphans caregivers so that they may provide high-quality care to the orphans. The framework guides outreach team leaders and nurses registered in primary health care institutions on the procedure to follow to improve and preserve the health of caregivers of children orphaned by HIV/AIDS.

The effect of using virtual reality goggles on psychological well-being and care burden of informal caregivers of patients hospitalized in a palliative care clinic

PurposeThis study was conducted to determine the effect of virtual reality goggles on the psychological well-being and care burden of informal caregivers of patients hospitalized in a palliative care clinic. MethodsPretest-posttest randomized controlled study. It was conducted from June-October 2023 with 44 informal caregivers (22 in the control, 22 in the intervention group). Caregivers in the intervention group were shown 360° relaxing virtual reality videos with virtual reality goggles for four weeks, three days a week, 30 min per use. The control group did not receive any intervention. Data were collected using the caregiver introduction form, psychological well-being scale, caregiving burden scale, and satisfaction form for virtual reality goggles. Analyses were performed with Independent Sample T-Test and Paired Sample T-Test. ResultsThe post-test mean score of the psychological well-being scale of the intervention group was statistically significantly higher than the control group (p < 0.05). The post-test mean score of the caregiving burden scale of the control group was statistically significantly higher than the intervention group (p < 0.05). 68% of the caregivers in the intervention group were very satisfied with using virtual reality goggles. This study revealed that using virtual reality goggles increased psychological well-being and reduced the care burden of informal caregivers of patients hospitalized in a palliative care clinic. ConclusionThe results of this study have revealed that virtual reality glasses can be used to support informal caregivers in palliative care. This study reveals promising results for improving the quality of patient care by supporting informal caregivers. ClinicalTrials.gov IDNCT06156540

Demographics, Clinical Characteristics, and Well-Being of Veterans with TBI and Dementia and Their Caregivers.

This study provides a detailed examination of older Veterans with traumatic brain injury (TBI) and dementia and their caregivers, focusing on Veterans' demographic, clinical, functional, safety risk, and behavioral characteristics and caregivers' demographic, clinical, and care-related characteristics and well-being. Veterans' caregivers (N = 110) completed a telephone-based survey. Veterans averaged eight comorbid health conditions, with over 60% having chronic pain, hypertension, post-traumatic stress disorder, or depression. Caregivers reported helping with an average of three activities of daily living, with the highest percentages of Veterans needing assistance with grooming, dressing, and bathing. Almost all Veterans needed assistance with shopping, cooking, medication management, housework, laundry, driving, and finances. Veterans averaged two safety risks, the most common being access to dangerous objects, access to a gun, and not being able to respond to emergency situations. Although Veterans averaged 14 behavioral concerns, caregivers reported that their family needs relating to TBI were generally met or partly met, and they voiced confidence in their ability to respond to behaviors and control their upsetting thoughts. Caregivers' mean burden score was severe, while mean depression and anxiety scores were mild. Caregivers reported an average of 10.5 h per day providing care and 20.1 h per day on duty. The findings demonstrate the increased presence of impairments, safety risks, and behavioral issues in Veterans with comorbid TBI and dementia, as well as increased impacts on families' burdens and care provision requirements. Clinicians should be alert for and educate TBI patients and caregivers on the warning signs of post-TBI dementia and its associated functional, behavioral, and safety risk profile, as well as challenges related to caregiver well-being. Healthcare policymakers must consider the increased caregiver demands associated with comorbid TBI and dementia, as well as the need for expanded long-term support and services.

The Role of Digital Health Interventions in Supporting Family Caregivers for People With Dementia to Improve Quality of Life.

Dementia is a chronic progressive terminal condition. Most care is provided by family caregivers (including close friends); their wellbeing is a public health priority. Caregivers manage increasingly complex needs with disease progression, and declining cognitive and physical function. This can impact the well-being of caregivers, and meaningful support is essential. This review article aims to understand what the benefits and challenges of digital health interventions are and provide considerations for future development of digital health interventions for family caregivers for people with dementia, to improve quality of life. Benefits include the valuable source of support from connective platforms; 24/7 accessibility; and opportunity for remote monitoring. However, this needs to balance with challenges, including the privacy of data concerns; and the digital divide driving inequalities in care provision for family caregivers with no access to internet devices. Digital health interventions can positively impact the overall well-being of family caregivers for people with dementia. If challenges are addressed and digital health interventions are designed to meet priorities for family caregivers, this can help improve the quality of life for family caregivers of people with dementia.

Strategies and sacrifices of family caregiving in the Somali-American community: a qualitative study

BackgroundAmong the many pressing concerns of the Somali-American community, and other similar immigrant and refugee communities as they grow in the United States, is the provision of care for older adults and adults with disabilities. The implications of effective caregiving range from the facilitation of community building and place-making to the delivery and management of healthcare on a systemic level. However, little is currently known about Somali-American family caregivers, including their duties and responsibilities, primary concerns, and the impacts of surrounding influences on their ability to fulfill their role.MethodsSemi-structured interviews were conducted with 10 Somali-American family caregivers in Somali language. The resulting transcripts were translated into English by a professional interpreter and analyzed using an inductive thematic analysis approach. A key informant from the community was additionally consulted for insights regarding cultural nuances and interpretations of idiomatic expressions and concepts.ResultsThematic analysis of the reports revealed the principal themes of visitation, patient accompaniment, and self-sacrifice through acceptance and God-consciousness as pervasive and salient concerns across participants. Furthermore, the heightened stresses of the COVID-19 pandemic revealed just how severe the consequences can be when access to culturally habituated navigational tools and coping mechanisms are restricted.ConclusionsIn light of our findings, the growing concern for discrimination and sociocultural discord in the Somali-American community presents a particularly prescient threat to the well-being and sustainability of family caregivers. Their experiences must be understood and used to promote education and partnership between the healthcare system and the community in order to build trust and ensure a healthy future for this indispensable population.

Virtual reality-guided mindfulness intervention to enhance psychosocial well-being in caregivers of end-stage kidney disease patients: protocol for a mixed-methods pilot randomised controlled trial

IntroductionCaregivers of patients with end-stage kidney disease (ESKD) face significant challenges that contribute to caregiver burden, negatively impacting their psychosocial well-being. Virtual-reality (VR)-guided mindfulness interventions have shown promise in reducing...

Health-related quality of life of children and adolescents with sickle cell disease: An evolutionary concept analysis

The concept of Health-Related Quality of life (HRQOL) of children and adolescents with Sickle cell disease (SCD) is not clearly understood due to the lack of available studies. This review aimed to elucidate various attributes and related concepts of HRQOL in children and adolescents with SCD using Rodgers' (2000) concept analysis framework. A systematic search was performed to identify studies reporting the attributes, antecedents, consequences, surrogate terms, and related concepts of HRQOL in children and adolescents with SCD. The review included 75 articles, including 70 quantitative, two mixed-methods, and three qualitative studies. These were categorized into attributes, antecedents, consequences, surrogate terms, related concepts, and an exemplar of HRQOL in children and adolescents with SCD. The review identified nine important attributes. It includes multidimensional and dynamic concepts, acknowledging the illness, maintaining emotional balance and self-control, coping with the disease, pain management, stigma and discrimination, treatment burden, palliative care and personal resilience. The antecedents were knowledge and attitude toward the disease, self-efficacy, social support, spirituality and spiritual well-being, disease severity, access to healthcare, environmental factors, and financial considerations. The consequences were independence in personal life, improved physical health outcomes, psychological well-being, family and caregiver well-being, improved family, social and peer relationships and social interactions, improved school performance, and improved overall HRQOL and long-term outcomes. This analysis provides an overview of HRQOL concepts related to children and adolescents with SCD, guiding further research into nursing care and clinical practice.

Health of the Pandemic Dementia Paid Staff and Unpaid Caregiver Workforce in Congregate Care and Community Settings

ObjectivesThe objective of this study was to assess the impact of the pandemic on the health, well-being, and access to services of paid staff and unpaid caregivers of persons living with dementia. DesignQuestionnaires were developed to capture the experiences of paid staff and unpaid caregivers throughout the pandemic, leveraging a pre-existing clinical trial collaborative. SettingCommunity and long-term care locations in Miami, Florida, Boston, Massachusetts, and the greater Baltimore, Maryland, and D.C. areas. ParticipantsPaid staff from Miami Jewish and Benchmark who worked with patients with dementia during the first two years of the pandemic. Unpaid caregivers who lived within the catchment area of the study sites and provided care for community-based persons with dementia. MeasurementsMeasures included the Coronavirus Impact Scale, the Herth Hope Index, NPI-Q, the Modified Caregiver Strain Index, PHQ-8, items about workplace changes, caregiving relationship, and changes to caregiver support. ResultsPaid staff were statistically more likely to have been exposed to, tested for, hospitalized, or seriously ill with COVID-19 and indicated moderate to severe impacts to medical and mental health services compared to unpaid caregivers. Unpaid caregivers exhibited significantly higher rates of depressive symptom severity and overall lower scores on the Herth Hope Scale compared to paid staff. ConclusionsOur findings suggest that the pandemic had significant impacts on the mental health and general well-being of unpaid caregivers. While notable that paid staff suffered from increased exposure and decreased access to services, policies supporting both workforces should respond to the unique outcomes that each faced, post-pandemic.

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Trauma-Informed Positive Parenting in Primary Care as a Tool to Support Child and Family Well-Being.

Factors affecting caregiver health and wellbeing, such as trauma and stress, can have significant negative impact on parenting behaviors and on subsequent child physical and mental health. Trauma-informed positive parenting (TIPP) is an effective tool that acknowledges and addresses a family's unique journey and needs, while promoting both nurturing caregiver-child interactions and appropriate limit setting. Primary care practices are in unique positions to provide such interventions, due to their long-standing and trusted involvement with families. Therefore, we propose that TIPP can feasibly be incorporated into the pediatric primary care setting to support overall family health and well-being. [Pediatr Ann. 2024;53(10):e360-e365.].

The Impact of Caregiver Affiliate Stigma on the Psychosocial Well-Being of Caregivers of Individuals with Neurodegenerative Disorders: A Scoping Review.

Background. Caregiver affiliate stigma concerning neurodegenerative disorders (NDDs) profoundly affects caregivers' well-being, though its full impact remains to be fully elucidated. Objectives. This scoping review aims to consolidate the current knowledge on caregiver affiliate stigma related to NDDs, explore its connection to caregiver psychosocial well-being, and pinpoint the gaps in the existing research. Methods. Adhering to the PRISMA-ScR guidelines, a comprehensive search of five databases was conducted for peer-reviewed, English language studies focusing on caregiver-affiliated stigma in relation to NDDs. Results. The initial search yielded 9033 articles, with 19 meeting the inclusion criteria after rigorous screening. Bronfenbrenner's ecological systems theory was employed to analyze various stigma conceptualizations, including public, courtesy, affiliate, and family stigma. Analysis revealed a correlation between elevated levels of affiliate stigma and increased caregiver burden, deteriorated mental health outcomes, and diminished quality of life. The internalization of stigma was found to vary across demographic groups, influenced by factors such as education level and social support. The review also highlighted the mediating role of coping strategies and the protective function of social support against stigma internalization. Conclusions, These findings underscore the necessity for targeted, culturally sensitive interventions that address caregiver affiliate stigma across multiple ecological levels. This review contributes to a more nuanced understanding of caregiver affiliate stigma in relation to NDDs, laying the groundwork for future research and intervention development aimed at enhancing caregiver well-being in diverse cultural contexts.

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Health and Well-being of Family ('Ohana) Caregivers of Native Hawaiian and Pacific Islander Adults Living with Alzheimer's Disease and Related Dementias.

We aimed to describe the health and well-being of family caregivers of Native Hawaiian and Pacific Islander (NHPI) adults living with Alzheimer's disease and related dementias (ADRD), explore cultural values related to caregiving, and characterize barriers and facilitators to their health and well-being. Caregivers of NHPIs living with ADRD were recruited from across the United States to complete a multimethod study including a survey followed by an interview about their health and well-being. Eleven participants completed surveys, six of whom completed an interview. Themes included caring as a community, lōkahi (balance), and the importance of sleep, food, and physical activity. Cultural values included connection to cultural practices, kūpuna (elders) as cultural knowledge holders, and the kuleana (responsibility) of caregiving. Caregiving for an NHPI adult living with ADRD occurs beyond the dyad, and is a matter of family and community. Culturally-based interventions offered through community and healthcare organizations may be critical to promoting caregiver health.