Caregiver Psychological Well-being Research Articles

CAREGIVING OUTCOMES AMONG INFORMAL CAREGIVERS OF PERSONS WITH MULTIMORBIDITY AND DEMENTIA: A SCOPING REVIEW

Abstract An emerging field of research involves caregiving among older adults with Alzheimer’s disease and related dementia (ADRD) and co-occurring chronic conditions (ADRD-multimorbidity). This scoping review aims to assess, synthesize, and identify gaps in the body of literature on caregiving outcomes among informal caregivers of individuals with ADRD-multimorbidity. We adhered to the scoping review framework by Arksey and O’Malley (2005) and Levac and colleagues (2010), which encompassed five steps: 1) identify the research question(s), delineate the inclusion and exclusion criteria, 2) search for relevant studies, 3) select studies, 4) chart the data, and 5) collate, summarize, and report results. Electronic databases including Ovid Medline, CINAHL, Embase, and PsycINFO were searched to identify relevant studies. A total of 1856 articles were identified and 29 were included in the final review. The majority of studies were quantitative, cross-sectional studies. The two most commonly examined caregiving outcomes were caregiver burden and psychological wellbeing. Most research on caregiver outcomes treated care recipients’ cognitive impairment and chronic conditions separately, rather than exploring their interaction. Most studies examining caregiver burden utilized Zarit Burden Index and its variants. Specific psychological wellbeing outcomes displayed great variability across studies. Despite challenges in synthesizing the extensive variability in the way cognitive status, ADRD-multimorbidity, and caregiving outcomes were measured, included, and reported, this review underscores the intricate challenges of caregiving, especially when dealing with both cognitive impairments and co-occurring chronic conditions. This complexity underscores the need for a deeper understanding of the diverse needs facing caregivers of people with ADRD-multimorbidity.

Care-giving activities, positive and negative care-giving appraisals, and care-giver psychological wellbeing during the Covid-19 pandemic

Abstract Public health crises like Covid-19 profoundly influence informal care-givers of older adults with functional health limitations. This study deepens existing understanding of care-giving processes during the pandemic to uncover insights useful for developing effective care-giving interventions for the post-pandemic era and future public health crises. Specifically, it examined (1) how care-giving activities during the pandemic impacted care-giver psychological wellbeing by affecting caregiving burden and the positive aspects of caregiving and (2) the moderating effect of pandemic-specific factors (i.e., care recipients’ unmet health-care needs due to the pandemic). Multiple-group analyses were conducted on data on 906 informal care-givers of older adults with functional health limitations, obtained from the Covid-19 Supplement and Round 10 Survey of the National Health and Aging Trends Study conducted in the United States. The mean age of participants was approximately 60 years, and most were white women. Positive aspects of care-giving significantly mediated the relationships between providing assistance in activities of daily living (ADL), instrumental ADL, and emotional support and positive affect. Care-giving burden significantly mediated the relationship between assistance in ADL and positive and negative affect. Care recipients’ unmet health-care needs moderated the relationships between assistance in ADL and burden, assistance in ADL and negative affect, and emotional support and positive affect. In sum, this study underscores the positive aspects of care-giving as well as care-giving burden and demonstrates that greater attention should be paid to care-givers caring for individuals with unmet health-care needs during public health crises. The results suggest that more-effective responses to public health crises must be developed, especially within health-care systems.

The psycho-social impact of cancer treatment on the caregivers of the patients

Objectives The incidence of cancer cases shows an increasing trend over the past two decades owing to several factors, such as increased life expectancy, aging population, behavioral, environmental, and occupational risk factors, and more. Consequently, a greater number of people are expected to take the role of principal caregivers in the near future. Cancer treatment can have a multifaceted impact on the quality of life and psychological well-being of not only the patients but also their families. Caregivers are expected and required to provide complex care and support for which they are neither prepared nor trained. The reports of feeling overwhelmed and stressed are high when the demands placed on them exceed their resources, resulting in a negative effect on the overall well-being of the caregivers, including the patients themselves. The impact covers a wide spectrum of emotional, physical, financial, social, cognitive, spiritual, and work-related effects. Material and Methods This is a cross-sectional study conducted (for over three months from May to July 2023) among the caregivers accompanying cancer patients attending a tertiary care hospital in a South Indian metropolitan city. All the adult caregivers of patients diagnosed with cancer at least two to six months before the time of the study were considered as the study population. A systematic random sample was applied to recruit a convenient sample of 150 caregivers, maintaining the enrollment of only one caregiver per patient. Sociodemographic details of the patients and their caregivers were collected. The Zarit Burden Interview (ZBI) based on a Likert scale was implemented to collect relevant data related to both the cancer patient and the family caregiver. Results Of the total 150 cancer patients, the most common type of cancer among the patients was head and neck (63, 42%), followed by cancers of the female reproductive system (44, 29.3%) and breast (24, 16%). Nearly 47% of caregivers were children of cancer patients, while 35.3% were spouses. Significantly higher burden scores on the “emotional strain” and “financial/physical strain” domains were observed among female caregivers. Higher burden scores on the “self-criticism” domain were independently associated with a shorter caregiver-patient contact time. Significantly higher burden scores on the “self-criticism” and “time/dependence” domains were observed among employed caregivers. Higher levels of burden on the “financial/physical strain” domain were reported by unemployed caregivers. Significantly higher burden scores on the “uncertainty” domain were observed among older caregivers and caregivers who were parents or spouses of the patients. Conclusion Caregiving impacts the physical, emotional, financial, and social aspects of the caregiver’s life. They adopt active coping strategies to overcome the impacts of caregiving. A majority of the caregivers experienced mild to moderate burden, while most scored low on quality of life. Attention to concerns and the psychological well-being of caregivers may improve the overall scenario.

Reducing Violence Risk: Home Healthcare Nurses and Early Identification of Informal Caregiver Burden.

An expanding body of literature suggests that informal caregiver burden is a growing issue that negatively impacts care recipients, informal caregivers, and formal care providers. Costs associated with informal caregiver burden include risk to the informal caregiver's physical, emotional, and psychological well-being and increased potential to perpetrate violence. By identifying interventions to support informal caregivers, home healthcare nurses can help decrease the risk of negative outcomes and reduce the burden on informal caregivers. This paper examines home healthcare nurses' role in helping reduce the impact of informal caregiver burden, thereby reducing the risk for violence. By prioritizing caregiver burden as a critical area of focus in reducing violence risk, home healthcare organizations and the nurses who work for them can help address gaps in care while also recognizing the informal caregivers' critical role in caring for their loved ones.

Retraction of "Home visiting impacts during the pandemic: Evidence from a randomized controlled trial of Child First" by Xia et al. (2023).

Reports the retraction of "Home visiting impacts during the pandemic: Evidence from a randomized controlled trial of child first" by Samantha Xia, Mervett Hefyan, Meghan P. McCormick, Maya Goldberg, Emily Swinth and Sharon Huang (Journal of Family Psychology, 2023[Aug], Vol 37[5], 569-580). This article is being retracted at the request of the publisher, and the editor and all authors of the original article consented. The MDRC study team identified two caregivers who were enrolled at baseline but were, themselves, minors. (The following abstract of the original article appeared in record 2023-81526-001.) 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) 2024 APA, all rights reserved).

StrokeCog-R: Protocol for a Pilot Randomised Controlled Trial Of A Novel Cognitive Rehabilitation Intervention For Post-Stroke Cognitive Impairment

Abstract Background Post-stroke cognitive impairment (PSCI) affects 50% of patients six months post-stroke and is associated with increased disability, reduced quality of life, diminished independence, and a higher risk of long-term care and dementia. Addressing cognitive impairment is crucial to maximise patient recovery, facilitate the return to pre-stroke activities, and optimise secondary prevention efforts. However, cognitive rehabilitation is underrepresented in standard stroke rehabilitation protocols. This pilot randomised controlled trial (RCT) aims to evaluate a novel cognitive rehabilitation intervention, StrokeCog-R, designed to enhance cognitive function in stroke survivors with PSCI. The primary aims are to assess the feasibility of patient recruitment and retention and to determine the statistical power needed for a definitive trial. A secondary aim is to evaluate the efficacy and acceptability of the intervention for individuals with mild-to-moderate PSCI. Methods Sixty-four consecutive stroke patients with mild-to-moderate PSCI will be recruited and randomly assigned to either the intervention group (StrokeCog-R) or the control group (usual care). The intervention involves five weeks of group-based cognitive rehabilitation using “Rehearsal-Based” and “Compensatory-Based” strategies, supplemented with tailored home activities. Cognitive function, self-efficacy, and caregiver psychological wellbeing will be assessed pre- and post-intervention (or control) and at a four-month follow-up. Intervention acceptability will be documented through focus groups following each intervention. Recruitment is ongoing, and the first intervention group has concluded. Results Recruitment and retention rates, the feasibility of randomisation, patient acceptability, and resource utilisation will be evaluated. Additionally, the effectiveness of various communication techniques for retaining participants between the intervention period and the four-month follow-up will be assessed. These data will inform recruitment strategies and the determination of necessary effect sizes to power a definitive trial. Conclusion This study will provide critical insights for a definitive trial, potentially making a substantial contribution to the evidence base for cognitive rehabilitation in stroke patients.

Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the ‘Mighty Children’ programme in Afghanistan

IntroductionTo ensure that humanitarian action is disability-inclusive, evidence is needed to understand how different strategies to support children living with disabilities and their families can work in these settings. Evidence...

The prevalence, characteristics, and psychological wellbeing of unpaid carers in the United Kingdom.

This study sought to describe the characteristics of unpaid carers in the UK and assess levels of depression, anxiety, and mental health treatment seeking behaviours in this population. Data was derived from Wave 9 (n = 2790) of the COVID-19 Psychological Research Consortium (C19PRC) study, a longitudinal survey of adults in the UK. Logistic regression analyses were conducted to examine the characteristics of unpaid carers, association between caregiver status and psychological wellbeing, and caregiver-specific factors associated with risk of poor psychological wellbeing. Approximately 15% (n = 417) of the sample reported providing unpaid care. Younger age, having three or more children in the household, and lower income were identified as significant correlates of caregiver status. Unpaid caregivers were at increased risk of depression or anxiety and mental health help-seeking. Unpaid caregivers who were younger, lived in households with one or two children, and had a lower income were at greater risk of depression or anxiety and engaging in mental health help-seeking. Caring for an individual with a terminal illness, long-term illness, learning disability or difficulty, mental health problems, physical disability, and other were linked to increased risk of depression or anxiety, while caring for someone with a learning disability increased risk of mental health help-seeking. This study indicates that at least one in eight people in the UK provide unpaid care, and that those who provide unpaid care have a far higher risk of experiencing depression or anxiety and seeking mental health treatment. The identification of risk factors associated with these mental health outcomes will facilitate the identification of those in most need of support.

Burden levels and predictive factors among caregivers of hemodialysis patients: a cross-sectional study in Oman.

Caring for individuals with chronic kidney disease (CKD) is a highly demanding task that can adversely affect the physical and psychological well-being of caregivers. This study aimed to investigate the burden experienced by caregivers of patients undergoing hemodialysis (HD) in Oman and explore the factors associated with this burden, including demographic and medical characteristics. A descriptive cross-sectional was employed. Caregiver burden was assessed, and demographic and medical variables were examined among caregivers of HD patients. A total of 326 unpaid family caregivers completed the Zarit Burden Interview scale, demographics and some medical variables. Linear multiple regression analyses were conducted to identify factors linked to caregiver burden. Of the caregivers, 62.9% reported a minimal burden, 21.8% experienced mild-to-moderate burden, 8.6% faced moderate-to-severe burden, and 6.7% encountered a severe burden. The final multiple regression model demonstrated statistical significance compared to the constant (F = 8.68, p < 0.001), with eight predictors explaining 18% of the variance, and caregivers' satisfaction with health emerged as the only significant predictor. A substantial portion of caregivers reported minimal burden. These findings suggest the need for further in-depth investigations into factors contributing to this favourable outcome. Furthermore, caregivers' satisfaction with health was the only significant predictor of their burden. Healthcare providers need to give special attention to this point and conduct periodic assessments of the primary caregivers' health. Implementing improvements in the healthcare system based on these findings could enhance the overall caregiving experience for HD patients and their caregivers.

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).

Perceived Stress and Coping Strategies Among Caregivers of Patients with Psychiatric Disorders—A Scoping Review

The psychological well-being of caregivers is crucial to enhancing their quality of life, which in turn increases the quality of care they deliver to patients with psychiatric disorders. The goal of the literature review was to find research that looked at caregivers of patients with psychiatric disorders and their perceptions of stress and coping strategies. I conducted a systematic literature search between June 2021 and October 2021 to search for publications using the electronic databases. One hundred and thirteen studies were evaluated based on their titles and 54 articles were evaluated based on their abstracts. Following title and abstract screening, 16 papers met the study’s goals (n = 16). In this review, most of the articles demonstrated the negative effect of stress and burden on the psychological states and well-being of caregivers of patients with psychiatric disorders and their quality of care. The results showed that caregivers often utilize a combination of coping and maladaptive coping strategies to handle stressful situations, including emotion-focused approaches such as cooperation, coercion, negative religion coping, and avoidance to decrease stress levels, and adaptive coping strategies such as the problem-solving approach.

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.&#x0D; 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.&#x0D; 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.&#x0D; 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.

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.