Caregiver Psychological Well-being Research Articles

Personal Growth and Psychological Well-Being of Dementia Caregivers

Dementia is a neurological condition that impacts mental processes such as reasoning or the ability to think. Caregiving for such individuals is a strenuous process that leads to both positive and negative changes in the caregiver’s life. Thus, the purpose of this research was to investigate the correlation between the personal growth and psychological well-being of caregivers. With the aid of pre-existing literature, two hypotheses were formed: (i) there is a positive correlation between personal growth and psychological well-being of a dementia caregiver, (ii) having significant social support positively correlates with improved personal growth and psychological well-being of the caregiver. Using convenient sampling, a sample of 102 participants from Pakistan above the age of 18 was selected, and two scales were administered to the participants. The first scale was ‘the role of caregivers' skills in caregivers' syndrome and caregivers' burden’, which assessed the extent of changes in psychological well-being and personal growth that the severity of dementia within patients had on the patient’s caregiver. The second was the ‘Caregiver Appraisal Scale’ which measured the caregiver’s burden, satisfaction, mastery, demands and the impact experienced by them. No deception was involved, and confidentiality of participants was maintained. Their participation was completely voluntary and their rights as research participants were protected at all times. Results were analyzed using the correlation coefficient. No significant correlation was found for either of the hypotheses. This research aimed to create awareness regarding the significance of being a caregiver and what it entails.

Filial piety and older adult caregiving among Chinese and Chinese-American families in the United States: a concept analysis

BackgroundThe culturally sensitive nursing practice has not embedded filial piety as a cultural value and stance pertaining to caregiving among aging Chinese and Chinese-American (CCA) families in the United States, yet it is critical for healthy aging among CCAs.PurposeTo understand filial piety when caring for aging CCAs and conceptualize an operational definition and framework.MethodsA systematic search was conducted in CINAHL, PubMed, Scopus, and PsycINFO databases. Analysis of the concept of filial piety among CCAs used Walker and Avant’s methods. Twenty-six studies were selected in the final full-text analysis.FindingsSynthesis of evidence identified four antecedents: (a) filial obligation as a ‘cultural gene’, (b) sense of altruism, (c) familial solidarity, and (d) societal expectation of ‘birth right’. Attributes included familial material and emotional support, obedience, pious reverence, and societal norms. Consequences were related to caregiver burden, psychological and physical well-being, quality of life, and health equity.ConclusionFilial piety is an intrinsic desire to support aging parents and an extrinsic desire to adhere to Chinese societal moral tenets. The proposed operational framework “Caregiving for aging CCAs in the United States” merits further study.

E-bibliotherapy for improving the psychological well-being of informal caregivers of people with dementia: a randomized controlled trial protocol

BackgroundProviding informal care for individuals with dementia is frequently a challenging and demanding experience that can have detrimental effects on the psychological well-being of caregivers. Regrettably, community-based caregiver services often prove inadequate, highlighting the necessity for innovative approaches to support caregivers.AimTo test the efficacy of e-bibliotherapy in improving the psychological well-being of informal caregivers of people with dementia.MethodThe study is divided into two phases. In phase 1, the research team will co-design the e-bibliotherapy app with caregivers. In phase 2, a randomized controlled trial will be conducted among 192 informal caregivers of people with dementia in Hong Kong. Caregivers will be randomly assigned to either the e-bibliotherapy group or the control group using simple randomization. Outcome measures will encompass caregivers’ psychological well-being, caregiving appraisal, mental health, saliva cortisol levels as an indicator of stress, and health-related quality of life for caregivers. Data will be collected at baseline, immediately post intervention, and 3 months and 6 months post intervention. General linear mixed model will be employed to analyze intervention effects. Qualitative interviews will be undertaken to explore caregiver experiences within this study and evaluate intervention acceptability using conventional content analysis methods.DiscussionThis study represents a pioneering effort in utilizing e-bibliotherapy to enhance the psychological well-being of informal caregivers of individuals with dementia, addressing the existing gap in caregiver services and facilitating knowledge dissemination within the community.Trial registrationThe trial has been registered on ClinicalTrial.gov (Ref: NCT05927805).

Neuropsychiatric symptoms after moderate-to-severe traumatic brain injury in Vietnam: Assessment, prevalence, and impact on caregivers.

Neuropsychiatric symptoms (NPSs) after moderate-to-severe traumatic brain injury (TBI) have been well documented in WEIRD (Western, educated, industrialized, rich, and democratic) populations. In non-WEIRD populations, such as Vietnam, however, patients with TBI clinically remain uninvestigated with potential neuropsychiatric disorders, limiting on-time critical interventions. This study aims to (1) adapt the Vietnamese Neuropsychiatric Inventory (V-NPI), (2) examine NPSs after moderate-to-severe TBI and (3) evaluate their impact on caregiver burden and well-being in Vietnam. Caregivers of seventy-five patients with TBI completed the V-NPI, and other behavior, mood, and caregiver burden scales. Our findings demonstrated good internal consistency, convergent validity, and structural validity of the V-NPI. Caregivers reported that 78.7% of patients with TBI had at least three symptoms and 16.0% had more than seven. Behavioral and mood symptoms were more prevalent (ranging from 44.00% to 82.67% and from 46.67% to 66.67%, respectively) and severe in the TBI group. Importantly, NPSs in patients with TBI uniquely predicted 55.95% and 33.98% of caregiver burden and psychological well-being, respectively. This study reveals the first evidence for the presence and severity of NPSs after TBI in Vietnam, highlighting an urgent need for greater awareness and clinical assessment of these symptoms in clinical practice. The adapted V-NPI can serve as a useful tool to facilitate such assessments and interventions. In addition, given the significant impact of NPS on caregiver burden and well-being, psychosocial support for caregivers should be established.

Pengaruh Caregiver Burden Terhadap Psychological Well-Being Dimoderatori Oleh Resiliensi Pada Ibu Generasi Sandwich

This study aims to determine the moderating effect of resilience on the relationship between caregiver burden and psychological well-being in mothers of the sandwich generation. Providing care for two generations simultaneously leads to a decrease in psychological well-being triggered by the caregiver burden experienced by mothers of the sandwich generation. The presence of resilience in individuals can enhance psychological well-being even when they are still experiencing caregiver burden. This quantitative study utilized a survey method with questionnaires, including the Burden Scale for Family Caregivers short scale, Ryff’s Psychological Well-Being Scale, and the Resilience Scale, which were administered to 130 Indonesian married housewives aged 30 to 55 years old, who were simultaneously taking care of and living with both their parents/in-laws and children. Data analysis was performed using moderator analysis techniques with the assistance of the statistical software Jamovi for Windows version 3.2.28. The results of the study indicate that caregiver burden has a negative impact on the psychological well-being of mothers in the sandwich generation. Furthermore, the resilience of mothers in the sandwich generation has a positive influence on psychological well-being, but resilience does not moderate the influence of caregiver burden and psychological well-being

Assessment of Psychological Well-Being among Relatives of Patients Diagnosed with Psychotic Disorders in Neuro-Psychiatric Hospitals in South-West Nigeria

Background: Psychotic disorder contributes to the mental health global burden. Having a family member suffering from the illness may result in a caregiver's psychological well-being depletion, increased burden of care and low quality of life. The study assessed the psychological well-being and the militating stressors against the relatives of patients diagnosed with psychotic disorder psychological well-being in Neuro–a psychiatric hospital in South-west Nigeria.
 Method: The research used a qualitative design to assess the psychological well-being of relatives, militating stressors against their psychological well-being and coping strategies adopted. Samples were obtained by purposive sampling technique to select forty-four (44) participants and one-on-one interviews using semi–structured interviews done. The data were collected by interview and using a recorder and the same was transcribed verbatim and analysed thematically.
 Result: The results generated were categorized into themes and subthemes which included: lack of autonomy, acceptance of the situation, insecure relationships with families and friends, poor environmental mastery, and impact on physical and psychological well-being while the sub-themes included: uneasy decision, maladaptive coping, stigmatization, unsupportive family and friends, financial burden, and reduced quality of life.
 Conclusion: The study suggests that nurses and other health professionals aid relatives in improving their coping skills, sensitization of the populace on mental disorders and provision of adequate information in the form of educational intervention may enhance their psychological well-being.

The Impact of Early-Life Recurrent Otitis Media in Children on the Psychological Well-Being of Caregivers.

Children with early-life recurrent otitis media (OM) will often endure pain, sleep disturbances, and other developmental setbacks that impact the surrounding family system. The aim of this study was to investigate the psychological well-being and family functioning of caregivers of children with early-life recurrent OM (rOM). Data from a longitudinal pregnancy cohort were used to categorize children into two groups: those with a history of recurrent OM (rOM group) and those without a history of rOM (reference group) by the age of 3 years. The psychological well-being of caregivers and the family functioning status were assessed using the Affect Balance Scale and the General Functioning Scale of the McMaster Family Assessment Device (FAD-GF), respectively, at the three-, five-, and eight-year follow-up appointments. Multiple linear regression models were used to analyze the data and were adjusted for potential confounding variables. There were significant associations between having a child with an early history of rOM and the Affect Balance Scale of caregivers for the negative affects subscale at the three- (p < 0.001) and five- (p = 0.018) year follow-ups, and the Affect Balance subscale at the three-year (p = 0.007) and the five-year follow-ups (p = 0.047). There were no significant associations measured during the 8-year follow-up period for the FAD-GF. The findings of this study further highlight the impact of caring for a child with rOM in early childhood on caregivers' psychological well-being in the first five years of a child's life. The impact, however, did not appear to influence the longer-term functioning of the family as a whole. 3 Laryngoscope, 134:1445-1449, 2024.

Home visiting impacts during the pandemic: Evidence from a randomized controlled trial of child first.

Existing research has found that home visiting programs for families with young children can improve children's development and strengthen caregiver and family well-being. However, the pandemic created numerous challenges for home visiting programs, forcing them to deliver services online or in a hybrid format to respond to pandemic-related challenges. Questions remain about the impacts of these programs when delivered at-scale via a hybrid model, especially during this uniquely challenging time. The present study reports 12-month impacts from a randomized controlled trial of Child First-an evidence-based home visiting program that provides psychotherapeutic, parent-child intervention (children ages 0-5) embedded in a coordinated system of care-when implemented as a hybrid service. This study estimates impacts within four domains: families' receipt of services, caregiver psychological well-being and parenting, child behavior, and family economic well-being. After randomly assigning families (N = 226) to receive Child First or typical community services, the research team surveyed caregivers (N = 183) about a year after study enrollment. Results from regression models with site fixed effects revealed suggestive evidence that Child First reduced caregivers' job loss, residential mobility, and self-reported substance abuse, and increased receipt of virtual services during the pandemic. There were null impacts on caregivers' psychological well-being, families' involvement with the child welfare system, children's behaviors, and other indicators of economic well-being. Implications for future research and policy are discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Does Caring for Parents Take Its Toll? Gender Differences in Caregiving Intensity, Coresidence, and Psychological Well-Being Across Europe

Given population ageing and the emphasis on in-home care, more working-age adults are facing the demands of providing unpaid care to the elderly with potential implications for their own well-being. Such effects likely vary across Europe because care is differently organized with a differing emphasis on public support, dependence on family, and orientation toward gender equality. We studied the relationship between unpaid caregiving for elderly parents and the psychological well-being of older working-age (50–64) men and women by analysing data from the Survey of Health, Retirement, and Ageing in Europe (SHARE), covering 18 countries between 2004 and 2020 (N = 24,338), using ordinary least squares (OLS). We examined risk of depression by caregiving intensity and tested whether coresidence mediated outcomes. Men and women providing care to parents experience important psychological well-being losses across Europe, especially when caregiving is intensive. A heavier caregiving burden associated with coresidence explains a regime gradient in depression, not least for women in Southern Europe. Results highlight the spillover costs of unpaid caregiving across Europe and the need to address caregiver psychological well-being, especially in contexts where state support for elder care is low and coresidence is common.

Difficult lives: A descriptive and relational study on the coping with stress and care burden of caregivers of patients with epilepsy

AimThis study was conducted to examine the relationship between coping with stress status and the burden of care of the caregivers of patients with epilepsy. Materials and methodsThis descriptive correlational study was carried out with a total of 230 voluntary caregivers of patients with epilepsy who visited the neurology clinics and outpatient clinics of a training and research hospital in the southeastern part of Turkiye between March 2022 and February 2023. Study data were collected through the Personal Information Form, the Zarit Caregiver Burden Assessment and the Ways of Coping Scale. Descriptive statistics and multiple regression analysis were used for the evaluation of the data. FindingsWhile the mean score of the caregivers from the Zarit Caregiver Burden Assessment was 41.20 ± 12.44, they had mean scores of 12.12 ± 3.25, 8.93 ± 1.93, 12.24 ± 3.61, 8.77 ± 3.17, and 7.89 ± 1.95, respectively, from the self-confident approach, optimistic approach, helpless approach, submissive approach, and social support-seeking approach sub-dimensions. In the study, a moderate positive statistically significant relationship was found between the caregivers' burden of care and the mean scores of the helpless and submissive approach sub-dimensions(p < 0.05). ConclusionThe caregivers' burden of care and coping with stress were at moderate levels. The helpless approach, which is one of the ineffective methods of coping with stress, was found to be higher. The helpless and submissive approaches were found to increase in this study as the caregivers' burden of care increased. ImplicationsThe use of effective coping skills to reduce the level of personal burden of care would improve the caregiver's physical health and psychological well-being.

Psychiatric disorders and caregiver burden in children with transfusion dependent β-thalassaemia and their caregivers

Children with thalassemia need care from the first years of life owing to the physical and psychological effects of their disorder. Thalassemia is a concern not only for the children's physical health but also the mental health of themselves and their caregivers.To screen the psychosocial problems and assessment of psychiatric morbidities among thalassaemic children and their caretakers, along with an assessment of caregiver burden in them.In this observational cross-sectional study, children with transfusion-dependent thalassemia, were included and were assessed for psychiatric morbidity and global functioning. Their parents were assessed for psychiatric morbidity and the caregiver burden they faced. All the parents completed two different questionnaires to assess their knowledge about the psycho-social functioning [using Pediatric Symptom Checklist-35 (PSC-35)] of their children and the level of the burden faced by them by Caregiver Burden Scale (CBS).A total of 46 children (28 boys and 18 girls) with transfusion-dependent thalassemia with a mean age of 8.83 ± 2.70 years and 46 parents (12 fathers and 34 mothers) were included in this study. More than 32 children had some psychosocial problems on screening by PSC-35. On assessment by CBS moderate caregiver burden was perceived in domains of general strain, isolation, disappointment, emotional involvement, and environment. A total of 65.3% of children and 62.7% of parents were diagnosed with psychiatric problems.Thalassemia affects not only the persons with the disorder but also their caregivers in several aspects, including their psychosocial well-being. This study emphasizes the role of a supportive group in the psychological well-being of caregivers, which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.

Psycho-Emotional Well-Being in Caregivers of People with Acquired Brain Injury: An Exploratory Study on the Human Immersion Model during the Omicron Wave.

The purpose of this study was to investigate the effects of a "human immersion model" (HIM) in improving psychological well-being in caregivers of patients with acquired brain injury (ABI) during the Omicron wave in Italy. Fifteen subjects affected by ABI, who attended our intensive neurorehabilitation unit from January to March 2022 and their caregivers were submitted to the HIM. This novel approach consisted of "real" long-lasting meetings between the patients and their careers in a hospital setting (1-72 h meeting per week for 8 weeks). Each ABI caregiver was assessed through the administration of a short psychometric battery before starting the first immersion session with their family member and at the end of the HIM. We found significant changes in the caregivers' scores analyzed for anxiety, as per SAS (p < 0.0007, d = 1.02), burden and stress (ZBI-22; p < 0.001, d = 0.65), and emotive intelligence (TEIQue-SF; p < 0.0007, d = 0.82). Our data suggest that the HIM may be useful to promote ABI caregivers' psycho-emotional well-being in the context of critical periods such as the COVID-19 pandemic.

Digital peer-to-peer support programme for informal caregivers of people living with motor neuron disease: study protocol for a multi-centre parallel group, single-blinded (outcome assessor) randomised controlled superiority trial

BackgroundPeer support is effective in improving psychological well-being of family caregivers of people with conditions such as dementia, cancer, and brain injury. However, there are limited data on effective psychological interventions for family caregivers of people living with motor neurone disease. Our objective is to evaluate the efficacy of a virtual peer support programme for improving caregiver psychological wellbeing and caregiving related outcomes.MethodsWe will conduct a multi-centre parallel group randomised controlled superiority trial. Using a multi-modal recruitment strategy, we will recruit informal caregivers from UK MND clinics, in-patient units, and hospices. We will randomise (1:1, stratified by gender) participants to either a 12-week virtual peer support programme or usual care comprising provision of online information resources publicly available via the MND Association website. Peer support programme elements will be delivered via a secure digital e-platform aTouchAway™ (Aetonix, Canada). Our target sample size is 160 (80 each arm). Our primary outcome is the Hospital Anxiety and Depression Scale (HADS) assessed at 12 weeks (primary endpoint). Secondary outcomes that will also be assessed at 12 weeks include the Zarit Burden Interview, Pearlin Mastery Scale, Personal Gain Scale, Positive Affect Scale, and the Brief COPE. Outcome assessors will be blinded to allocation. Tertiary outcomes include perceived usability (1 item 9-point Likert scale) and acceptability (semi-structured qualitative interviews) of the peer support programme. Intervention fidelity measures will comprise frequency, type (text, audio, video), and duration (audio and video) of peer support contact downloaded from the aTouchAway AWS server. We will use a mixed-effects linear model to test the effect of the intervention on the primary outcome. Secondary outcomes will be analysed using linear regression. We have ethical approval (21/NW/0269) from the North-West Research Ethics Committee, UK.DiscussionThis single-blinded randomised controlled trial will determine the effect of a virtual peer support programme on caregiver psychological wellbeing and caregiver burden. This study will examine the impact of a virtual peer support intervention on quality-of-life measures in informal caregivers of individuals with MND living in the community.Trial registrationClinicalTrials.gov: NCT04695210

FACTORS ASSOCIATED WITH VOLUNTEERING AMONG FAMILY CAREGIVERS OF OLDER ADULTS

Abstract Family caregiving has been linked to an increased risk of poor mental health, poor physical health, and higher rates of perceived social isolation among caregivers. Despite the connection between caregiving and negative outcomes, or perhaps because of this connection, caregivers seek out and enjoy other life roles and activities including formal volunteerism. To explore the connection between informal caregiving and volunteering and establish the representative prevalence of formal volunteering among caregivers, descriptive and multivariate logistic regression analyses were carried out with data from 1,745 caregivers in the National Study of Caregiving (NSOC) (2017). Utilizing social capital theory four models were constructed with salient demographic characteristics associated with volunteering (model 1), caregiving context (model 2), caregiver physical and mental health (model 3), along with participation in informal and formal social networks (model 4). About a quarter of the sample participated in volunteering (26%). The average age was 60.5 years (SD = 14.3) and more than half consisted of female caregivers (67.11%). Non-Hispanic Whites (62.9%) were the majority of the sample, followed by non-Hispanic Blacks (28%), Hispanic (6.5%), and caregivers in other racial/ethic groups (2.6%). Gender, educational achievement, caregiving for a spouse, coresiding with care recipient, caregiving for multiple care recipients, quality of relationship with care recipient, caregiver psychological well-being, having emotional/physical support, attending religious services, and group activity participation were all significant indicators for caregiver volunteerism. Findings support the importance of both human and social capital in volunteering among caregivers.

A Qualitative Study to Understand the Impact of Caring for Traumatic Injury Survivors

Following traumatic injury, an informal carer is often required to support recovery. Understanding the impact of caregiving is important to inform intervention design. to explore the impact of caring on family and caregiver finances, employment, social life, and psychological wellbeing. Semi-structured interviews conducted with carers of traumatic injury survivors. Interviews were audio recorded, transcribed and thematically analysed, informed by the Roy Adaptation Model (RAM) and International Classification of Functioning, Disability and Health (ICF). Ten participants were interviewed. Key themes included (1) financial impact/employment issues, (2) relationships and support and (3) psychological impact. Most carers did not receive professional support with daily care post-discharge. Carers' employers responded positively, supporting them even after extensive leave. Carers received inconsistent communication whilst visiting trauma survivors in hospital; carers with healthcare experience were favoured. Navigating and receiving benefits was complex. Some carers found it difficult to accept the trauma survivor's injury, whilst others focused on achieving goals. Support from professional services is limited outside hospital settings for non-brain injuries. Future interventions and healthcare services should acknowledge the lack of psychological support for carers. Researchers should consider using the ICF/RAM when designing interventions to ensure the full impact on carers is addressed.

Dyadic associations between perceived social support and psychological well-being in caregivers and older care recipients.

Caregiving can be burdensome for both family caregivers and older care recipients (i.e., adults 75 years or older with care needs). This study aimed to determine dyadic associations between caregivers' and care recipients' perceived social support from others (e.g., family and friends) and psychological well-being as a dyad. Caregivers and care recipients (N = 215 dyads) in this cross-sectional study were recruited by pensioner trade unions in Italy. Both members of the dyad completed the World Health Organization-Five Well-Being Index (WHO-5). Social support was measured with the Carers of Older People in Europe Index for caregivers and the Oslo-3 Scale for care recipients. Dyadic data were analyzed with the actor-partner interdependence model. Caregivers' and care recipients' well-being was moderately correlated (r = 0.41, p < .01), with care recipients reporting significant lower well-being (MCR = 30.95 vs. MCG = 46.45). Social support perceived by the caregivers was positively associated with their own well-being (actor effect; β = 3.31, p < .001) and with the care recipients' well-being (partner effect; β = 0.58, p < .001). No significant care recipient actor and partner effects were detected. This study provided evidence on crossover effects between social support and well-being in caregiving dyads. Findings have implications for research and clinical practice in familial aged care. Family interventions targeted at the caregivers' broader social environment might enhance both dyad members' well-being. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Quality of life and psychological well-being among children and adolescents with diabetes and their caregivers using open-source automated insulin delivery systems: Findings from a multinational survey

BackgroundOpen-source automated insulin delivery (AID) systems have shown to be safe and effective in children and adolescents with type 1 diabetes (T1D) in real-world studies. However, there is a lack of evidence on the effect on their caregivers’ quality-of-life (QoL) and well-being. The aim of this study was to assess the QoL of caregivers and children and adolescents using open-source AID systems using validated measures. MethodsIn this cross-sectional online survey we examined the caregiver-reported QoL and well-being of users and non-users. Validated questionnaires assessed general well-being (WHO-5), diabetes-specific QoL (PAID, PedsQL) and sleep quality (PSQI). Results168 caregivers from 27 countries completed at least one questionnaire, including 119 caregivers of children using open-source AID and 49 not using them. After inclusion of covariates, all measures but the PAID and one subscale of the PedsQL showed significant between-group differences with AID users reporting higher general (WHO-5: p = 0.003), sleep-related (PSQI: p = 0.001) and diabetes-related QoL (PedsQL: p < 0.05). ConclusionsThe results show the potential impact of open-source AID on QoL and psychological well-being of caregivers and children and adolescents with T1D, and can therefore help to inform academia, regulators, and policymakers about the psychosocial health implications of open-source AID.

Caregiving for Foreign-Born Older Adults With Dementia.

This study examines how nativity, dementia classification, and age of migration (AOM) of older foreign-born (FB) adults are associated with caregiver psychological well-being and care burden. We used linked data from Round 1 and Round 5 of the National Health and Aging Trends Study and Round 5 of the National Study of Caregiving for a sample of nondementia caregivers (n = 941), dementia caregivers (n = 533), and matched care recipients. Ordinary least squares regression models were estimated, adjusting for caregiver characteristics. Relative to nondementia caregivers, dementia caregivers were more likely to provide care for an older FB adult (8.69% vs. 26.70%), reported more assistance with caregiving activities, worse quality of relationship with care recipients, and higher care burden than nondementia caregivers. In adjusted models, interactions of nativity status × dementia and AOM × dementia revealed that overall, caregivers of older FB adults with dementia who migrated in late life (50+) reported lower psychological well-being than those caring for older FB older adults who migrated at (20-49 years) and (0-19 years). Moderating effects of AOM on the link between dementia caregiving and care burden were not observed. Age of migration of older FB adults with probable dementia may have unique effects on the caregiver's psychological well-being. Our results underscore the importance of considering sociocultural factors of FB adults beyond nativity and the need for research to develop culturally appropriate interventions to enhance psychological well-being and reduce the care burden among dementia caregivers.

190 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): FACTORS ASSOCIATED WITH THE BURDEN EXPERIENCED BY CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract Background To date, little research has been carried out exploring the burden experienced by informal caregivers of People with Dementia (PwD). We explored factors that influence the burden experienced by caregivers of PwD over 12 months. Methods Fifty-two PwD and their informal caregivers were recruited by convenience sampling to the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed model analyses were used to investigate associations of caregiver burden (measured by the Zarit-Burden Interview; ZBI) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety, depression, and caregiver distress); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, transportation needs, education level, occupation and living situation of the PwD, and employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, and indices of dependence of PwD. Results Across all domains, caregiver burden significantly increased over time (p&amp;lt;0.001) and less burden was experienced by caregivers of older PwD (p&amp;lt;0.05). In PWB, higher caregiver depression levels predicted higher levels of caregiver burden (p=0.033). In the SCR domain, caregivers of PwD who were independent in their transport needs experienced lower levels of burden (p=0.002). No other factors within the PFH or MED domains reached significance in predicting caregiver burden. Conclusion This longitudinal analysis elucidates potential predictors of caregiver burden and highlights the need for future research to be carried out in this area. In particular, psychological well-being in caregivers was shown to significantly impact on the experience of burden. Interventions to alleviate caregiver burden should be tailored to include support for psychological well-being.

Impact of caregiver burden on caregiver mental health in patients with esophageal cancer: chain mediating effects of benefit finding and rumination, a cross-sectional study.

Cancer caregivers are the main supporter for the tumor patients, they not only need to provide daily nursing to the patients, but also suffering the pressure from economy, emotion and even family members. The mental health of tumor patient is mostly noticed, while not caregivers. The mental health of caregiver greatly affected the nursing quality and even the treatment outcomes. In the current study, the mechanisms underlying the links between caregiver burden, benefit finding, mental health, and rumination in those caring for people with esophageal cancer were examined. The study was using a convenience sampling, 166 esophageal cancer patients in 2 general hospitals in Jiangsu Province, China, and caregivers of patients were included after excluded the non-conforming patients. Data were collected using investigator-developed questionnaires, the Benefit Finding Scale (BFS), the Event-Related Rumination Inventory (ERRI), the Zarit Burden Interview (ZBI), and the Hospital Anxiety and Depression Scale (HADS) during May 2020 to December 2020. The results were analyzed by SPSS, and the chain mediating effect was analyzed by the the SPSS PROCESS Macro Model. The study comprised 166 caregivers with an average age of (59.96±11.48) years, most of them were female (85.5%). The ZBI was positive correlated with HADS (r=0.882, P<0.01), and negative correlated with BFS (r=-0.873, P<0.01). Intrusive rumination and deliberate rumination in caregivers were negatively correlated (r=-0.901, P<0.01) and positive correlated (r=0.904, P<0.01) with BFS scores, respectively. Furthermore, research have discovered a chain mediation impact of benefit finding and rumination between caregiver burden and psychological well-being among carers of esophageal cancer patients. The findings of this study imply that benefit finding and rumination are crucial components of the coping strategy used to buffer against negative emotion (such as anxiety and depression). Therefore, the mental health of caregivers should also be noticed, and health care professionals should provide targeted interventions to increase the caregiver's level of benefit finding and promote deliberate ruminative thinking.