Caregiver Scores Research Articles

Caregiver-Youth Agreement on the Nine-Item Avoidant/Restrictive Food Intake Disorder Survey.

Patient and caregiver perspectives are critical in the evaluation of avoidant/restrictive food intake disorder (ARFID); however, little is understood about how caregiver and youth perceptions may differ. This study compared caregiver and youth reports among pediatric patients from an outpatient ARFID program. Patients (217 individuals with ARFID, aged 8-17) and their caregivers completed the Nine-Item ARFID Screen (NIAS), a screening tool with parallel youth and caregiver report forms. The NIAS measures ARFID symptomatology across three presentations: sensory-based selectivity (Picky Eating), low appetite/lack of interest in eating (Appetite), and fear of aversive consequences (Fear). Patient and caregiver NIAS scores were compared using t tests, and agreement was assessed via Pearson correlations. We examined the unadjusted bivariate association between patient age and caregiver-patient agreement. Patient mean age was 12.9 (SD = 2.5) and the majority were male (57.1%) and White, non-Hispanic (68.2%) and with private insurance (88.0%). Caregivers reported higher ARFID symptomatology than patients themselves. Using caregiver scores compared to patients, a larger percentage was classified as all three presentations (23.5% vs. 11.5%) or combined selectivity and appetite (46.0% vs. 31.8%). Caregiver scores were higher on average regardless of patient age. Results support obtaining both patient and caregiver reports whenever possible. Each perspective, as well as areas of discordance, may inform additional evaluation and treatment planning.

Caregiver and Child Adverse Childhood Experiences: A Meta-Analysis.

Exposure to adverse childhood experiences (ACEs) is associated with adverse impacts on subsequent generations. The extent to which caregiver ACEs are associated with their child's ACE score is unclear. To meta-analytically examine the association between caregiver and child ACE score. Potential moderators of this association were explored. Systematic searches were conducted using MEDLINE, Embase, PsycINFO, and CINHAL from 1998, the year the ACEs questionnaire was published, to February 19, 2024. Inclusion criteria were that the ACEs questionnaire was completed for both caregiver and child, an effect size was available, and the study was published in English. Variables extracted included sample size and magnitude of association between caregiver ACEs and child ACEs, mean caregiver and child age, sex (% female), race and ethnicity, and informant of ACEs. Seventeen samples (4872 caregiver-child dyads) met inclusion criterion. Results revealed a large pooled-effect size between caregiver and child ACEs (r = 0.33; 95% CI, 0.25-0.41; P < .001), such that higher caregiver ACEs score was associated with higher child ACEs score. This association was stronger among studies with younger caregivers and studies that utilized caregiver-report compared with child self-report of ACEs. Many studies were conducted in North America with female caregiver samples, limiting generalizability beyond these populations. Caregiver ACEs were strongly associated with child ACEs. Prevention and intervention efforts for caregivers should be trauma informed and focused on bolstering protective factors that may break cycles of intergenerational risk.

The impact of a caregiver's chronic illness on childhood psychosocial functioning.

Prolonged activation of the body's stress response from chronic exposure to adverse stressors may have a significant impact on lifelong psychosocial functioning. Screening for the impact of prolonged adversity in childhood has become an integral component of pediatric care. While past research has separately explored the impact of caregiver chronic illness and caregiver toxic stress on children, the relationship between caregiver chronic illness disability burden, caregiver parental toxic stress, and their child's psychosocial functioning is not well understood. This study aimed to investigate how caregiver chronic illness disability burden and caregiver toxic stress impact childhood psychosocial dysfunction (CPD). This pilot study was conducted at two free family medicine clinics in Inland Southern California between August and December 2022. It surveyed caregivers with chronic illness of any age or functional capacity who are full-time caretakers of children aged 4-17 years old. Validated screening tools assessed caregiver disability burden (World Health Organization Disability Assessment Schedule 2.0-12), parental toxic stress (Functional Impact of Toxic Stress for Parents), and pediatric psychosocial functioning (Pediatric Symptom Checklist-17). Regression analysis tested if caregiver scores on these measures predicted CPD. Twenty-nine participants completed the survey. High caregiver chronic illness disability burden and toxic stress together significantly predicted CPD. Caregiver toxic stress alone predicted CPD, whereas chronic illness disability burden alone did not. This study highlights the relationship between caregiver chronic illness disability burden, caregiver toxic stress, and childhood psychosocial dysfunction, and may contribute to providing holistic care to children and their caregivers. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Psychological conditions of caregivers of adult subjects with Prader-Willi syndrome

BackgroundPrader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder. Individuals with PWS face a range of cognitive, behavioral, and emotional challenges that require comprehensive and lifelong care, posing significant demands on their caregivers. The study is not only aimed to assess the psychological conditions of caregivers of adult subjects with PWS focusing on psychological distress and coping, but also to shed light on a crucial yet often overlooked aspect of healthcare. This study aims to compare the psychological well-being of individuals with PWS and their caregivers, providing valuable insights that can potentially improve the quality of care for these individuals. The sample recruited at the Division of Auxology, IRCCS Istituto Auxologico Italiano, was composed of 30 adult subjects with PWS (11 men and 19 women; mean age ± SD: 36.4 ± 10.31 years; mean Body Mass Index (BMI): 35.7 ± 8.92: kg/m2) and their caregivers (10 men and 20 women). To assess the psychological condition of caregivers, the Italian-validated versions of the Depression Anxiety and Stress Scale (DASS-21) and the Coping Orientation to the Problems Experiences (COPE) were used, while to assess the psychological well-being of individuals with PWS and their caregivers, the Italian validated version of the Psychological General Well-Being Index (PGWBI) was used.ResultsDepression (p < 0.001), Stress (p = 0.050), and Total score (p = 0.009) of DASS 21 were higher in the caregivers of subjects with PWS than in the general population. PGWBI scores of caregivers were significantly lower than in individuals with PWS in Positive Well-being (p < 0.001), General Health (p = 0.006), Vitality (p = 0.004), and the total score (p = 0.006). The depression subscale of PGWBI was higher in caregivers than in subjects with PWS. Correlations between the subscales of COPE and the total score of PGWBI in caregivers revealed that the Avoidance subscale of COPE had a negative significant correlation with the total score of PGWBI (p = 0.003).ConclusionsOur results highlighted several critical insights into the profound emotional and psychological challenges faced by the caregivers of individuals with PWS.

Posttraumatic growth among burn patient family caregivers in China

BackgroundBurns carries a high risk of severe physical damage, prolonged recovery, and mental health implications for both patients and their caregivers. While distress among caregivers of burn patients has been studied, less attention has been given to potential positive psychological changes. This study focuses on the prevalence, temporal dynamics, and predictors of posttraumatic growth (PTG) among caregivers. MethodsA cross-sectional survey was conducted with 161 family caregivers from two Chinese burn units in 2016–2017. Participants completed a general information questionnaire and four measures: Posttraumatic Growth Inventory, Posttraumatic Stress Disorder Checklist, Depression, Anxiety, and Stress Scale-21, and Multidimensional Scale of Perceived Social Support. ResultsThe PTG scores for caregivers, with an average of 59.8 (± 13.9), exhibited a curvilinear pattern over a period of 36 months, initially decreasing and then increasing. Multiple linear and quadratic regression analyses affirmed that heightened anxiety (p < 0.001), male gender (p < 0.05), college education (p < 0.05), and increased social support (p < 0.05) positively predicted family caregiver PTG. ConclusionsThis is the first study of burn injury caregiver PTG. The study indicates caregivers of burn patients may undergo positive psychological transformation. Variations in predictive factors necessitate validation through longitudinal research. The dynamic interplay of psychological outcomes between patients and caregivers requires further exploration.

Relationship between health belief levels and fear of cancer recurrence in breast cancer patients: Development of a predictive model

This study examines the relationship between health beliefs and fear of cancer recurrence among breast cancer (BC) patients and develops a predictive model for cancer recurrence fear. A total of 120 patients from the Breast Surgery Department of a top tertiary hospital, spanning December 2022 to December 2023, were included in the study. Data were collected using general information questionnaires, Champion&amp;rsquo;s Health Belief Model Scale (CHBMS) and the Fear of Progression Questionnaire-Short Form (FoP-Q-SF). The analysis revealed that CHBMS and FoP-Q-SF scale scores of BC patients were 94.17 &amp;plusmn; 15.59 points and 34.90 &amp;plusmn; 7.15 points, respectively. The total CHBMS score, perceived benefits, health motivation, and self-efficacy were negatively correlated with the total FoP-Q-SF score and its dimension scores (P &lt; 0.05), whereas perceived severity, perceived susceptibility, type of operation, radiotherapy and chemotherapy treatment, and perceived barriers showed a positive correlation (P &lt; 0.05). Significant differences in FoP-Q-SF scores were observed among patients of different ages, marital statuses, education levels, average monthly household incomes, levels of family caregiving, tumor node metastasis (TNM) stages, and types of medical insurance (P &lt; 0.05). Multivariate logistic regression analysis identified age, marital status, education level, average monthly household income, family caregiving, TNM stage, chemoradiotherapy treatment, and CHBMS scale scores as significant factors influencing cancer recurrence fear (P &lt; 0.05). A predictive model regression equation was established, and the model&amp;rsquo;s area under the ROC curve was 0.759 (95% confidence interval = 0.702 &amp;ndash; 0.834, P &lt; 0.001). Patients aged 50 years and older exhibited higher fear levels. This fear is also affected by age, marital status, education level, average monthly household income, family caregiving, TNM stage, and chemoradiotherapy treatment. The predictive model based on these factors demonstrates good predictive efficacy for cancer recurrence fear, providing a basis for early identification of high-risk patients and targeted nursing interventions.

Predictors of caregiver burden in Alzheimer’s disease: Caregiver stress, life satisfaction and quality of life levels

Objective: The purpose of this study was to determine the impact of socio-demographic and health characteristics, caregiving stress, life satisfaction, and quality of life on the caregiving burden in caregivers of Alzheimer’s patient. Methods: This study is a descriptive-correlational type study. A total of 146 individuals who are caregivers of Alzheimer’s patient constitute the sampling of the study. The Zarit Burden Interview, Caregiver Strain Index, Satisfaction with Life Scale, and SF-36 Quality of Life. Results: The care burden mean score of caregivers was 61.29±10.3. It was determined that age (β=0.648), caring duration (β=0.429), gender(β=0.672), marital status(β=0.936), educational status(β=0.863), the affinity of the caregiver with the patient(β=0.734), working status(β=0.524), perceived income adequacy(β=0.926), perceived health condition(β=0.682), presence of chronic disease(β=0.529), caregiving stress(β=0.633), life satisfaction score(β=-0.775), physical subscale score (β=-0.824) and mental subscale score(β=-0.489) quality of life had an influence on the caregiving burden (p&lt;0.001). It was determined that the effective determining factors account for 76.4% of the variation in the caregiving burden. Conclusions: The caregivers of Alzheimer’s disease patients have a high caring burden. In addition to the socio-demographic and health characteristics of caregivers, caregiving stress, life satisfaction, and quality of life are important determinants of the caring burden.

Persistent postural perceptual dizziness (PPPD) in pediatric patients after COVID-19 infection

BackgroundPatients with long-COVID suffer from symptoms that continue or develop after a COVID-19 or SARS-CoV-2 infection and are present for four or more weeks after the initial infection. This case series describes a group of previously healthy adolescent patients with long-COVID who were seen in a pediatric vestibular clinic for evaluation of severe dizziness and were diagnosed with persistent postural-perceptual dizziness (PPPD). By presenting their symptoms, management and treatment effects, this study aims to provide a diagnostic and therapeutic framework for providers who encounter these patients. MethodsPatient records were reviewed for past medical history, symptoms, physical exam findings, results of audiometric and vestibular testing, dizziness handicap inventory for patient caregiver (DHI-pc) scores, and treatment recommendations. Parents of patients were contacted for a follow up survey to assess treatment adherence and outcomes including changes in symptoms and return to activity. ResultsA series of 9 adolescent patients were referred from a multidisciplinary long-COVID clinic and diagnosed with PPPD. Recommended treatment included vestibular physical therapy, selective serotonin reuptake inhibitor medication, and cognitive behavioral therapy. The majority of patients experienced an improvement in their symptoms, and all patients had improved activity levels and DHI-pc scores after treatment. ConclusionTo the best of our knowledge, no previous reports exist discussing PPPD in long-COVID patients. This case series provides insight into symptom evolution and treatment efficacy in this patient population.

The assessment of care burden and influencing factors on family caregivers for cancer patients.

The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities. This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye. This cross-sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio-demographic characteristics. The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles. Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost-effective holistic care. The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case-control studies, cross-sectional studies) in Epidemiology (STROBE). Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs.

Care preparedness of family caregivers of maintenance hemodialysis patients: a cross-sectional study

With the increasing number of maintenance hemodialysis (MHD) patients, growing attention has been paid to the quality of care. Strengthening care preparedness of family caregivers is essential to improving the nursing quality. The purpose of this study is to explore the care preparedness level of family caregivers of MHD patients and its influencing factors, so as to provide guidance for the development of targeted care interventions. A total of 237 family caregivers of MHD patients were recruited from the hemodialysis room of two tertiary hospitals in Wuhan using the Convenience sampling method. They were surveyed by the general data questionnaire, Care Preparedness Scale and Positive Aspects of Caregiving. Statistical analysis was conducted using IBM SPSS software, version 21.0. The statistical tests conducted in this study were two-tailed, and a significance level of P < 0.05 was deemed as statistically significant. The care preparedness and positive aspects of caregiving scores of family caregivers of MHD patients were 19.05 ± 5.64 and 31.28 ± 7.28 points, respectively. The care preparedness level of family caregivers was significantly positively correlated with positive aspects of caregiving (P < 0.01). The results of multiple linear regression analysis showed that the total nursing time and whether family caregivers had chronic diseases and positive aspects of caregiving were the main factors influencing their care preparedness (all P < 0.05). These three factors accounted for 49.6% of the variance. The care preparedness of family caregivers of MHD patients remains to be continuously improved. Medical staff should emphasize the important role of total nursing time, whether the caregiver has a chronic disease, and positive aspects of caregiving in improving care preparedness in this population. To achieve this end, medical staff can provide targeted support and guidance for caregivers according to the influencing factors, such as implementing group psychological education, strengthening the training, offering social support, remote intervention (including family caregivers’ education through the media), and so on. Meanwhile, caregivers should be evaluated dynamically, and information and emotional support should be provided for them.

Effects of the Internet-based rehabilitation information sharing program on psychological stress of family caregivers of inpatients: A non-randomized controlled study.

The psychological impact of Internet-based rehabilitation information provision on family caregivers of inpatients has not yet been investigated. This study investigated the impact of the Internet-based rehabilitation information sharing program on anxiety and depression among family caregivers of inpatients. Participants were patients admitted to a rehabilitation hospital and their families. The Internet and Communication Technology (ICT) group received weekly reports with photos and videos showing rehabilitation progress and patients' activities of daily living, whereas the control group received only conventional care. The primary outcomes were the anxiety and depression scores of family caregivers, assessed at admission, discharge, and 1 month after discharge. Eighty-three participants were followed up (ICT group, n = 43; control group, n = 40). To minimize the impact of confounding factors, propensity-score matching was performed. Significant effects on anxiety (P = .03) and depression (P = .049) were found in the ICT group compared with the control group. The median difference in anxiety scores from discharge to 1 month post-discharge was -1.0 (interquartile range [IQR]: -2.0 to 0.8) in the ICT group versus 1.0 (IQR: -1.0 to 2.0) in the control group. The median difference in depression scores from admission to discharge was 0.5 (IQR: -1.0 to 2.8) in the ICT group and 2.0 (IQR: 1.0-3.8) in the control group. The Internet-based rehabilitation information sharing program may help reduce the family caregivers' psychological stress, enabling improved patient care.

Care Burden and Compassion in Caregivers of Stroke Survivors

Objective: This study was conducted to evaluate the factors related to care burden and compassion levels of caregivers of family members who had a stroke and the relationship between the two variables. Methods: The study was designed as a descriptive, cross-sectional, and correlational one. The sample included 280 stroke survivors and family caregivers. The data were collected using a Family Caregiver Information Form, the Stroke Survivors Information Form, the Zarit Burden Interview (ZBI), the Compassion Scale (CS), and the Modified Barthel Index (MBI). Results: In the study, it was determined that the compassion scores (3.71±0.85), and caregiving burden scores (34.30±17.42) of the family caregivers of stroke survivors were moderate. There was a negative, strong and significant relationship between caregiving burden and compassion (p

Stress and Perception of Nurse Support in Parents Whose Babies are Hospitalized in The Neonatal Intensive Care Unit

Aim: The aim of this study is to determine the stress status and nurse-parent support perception in parents whose babies are in the neonatal intensive care unit. Material and Method: This research is of descriptive type. 127 parents whose babies were in the neonatal intensive care unit constituted the sample of the study. Data were collected with Parent Information Form, the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU) and the Nurse Parent Support Tool (NPST). Results: The stress level of the parents was found to be 3.24 ± 1.21 and the NPST score was 3.65 ± 0.82. Those who live in the same city as the neonatal intensive care unit and who have a baby boy, and those whose babies receive respiratory support were found to have a higher parental role alterations mean subscale score. As the education level of the father decreased, the support for respect and quality caregiving scores increased. Perceived nursing support increased in parents of breastfed and formula-fed babies. Conclusion: It was determined that there was a positive relationship between the stress level perceived by parents and the perception of nurse support. Nursing support should be given to all parents admitted to the NICU.

Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study

BackgroundThere are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment.MethodsThis prospective cohort study enrolled CYPs aged 5–21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12.ResultsForty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers’ mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP’s illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers’ QoL and family functioning scores were significantly greater.ConclusionWe found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.

Caregiver Satisfaction with Medical Providers' Communication: Comparison Between Spanish-Speaking Caregivers with Limited English Proficiency (LEP) and Caregivers Who Are English-Proficient (EP).

Barriers to communication have been observed with patients and families who prefer a language other than English for medical conversations, referred to as individuals with limited English proficiency (LEP). We used the pediatric Family Satisfaction with ICU 24R (FS-ICU) survey to assess communication satisfaction for English-proficient (EP) and Spanish-speaking LEP caregivers. We added additional questions related to attendance at morning rounds, frequency of provider updates, interpreter use, and general satisfaction with communication. This was a single-center, prospective, observational cohort study in the pediatric intensive care unit (PICU) and cardiothoracic intensive care unit (CICU) of a tertiary, academic, free-standing children's hospital. Caregivers of children < 18 years old admitted for at least 48 h to the PICU or CICU between June and September 2022 were eligible for enrollment. 24LEP and 74 EP caregivers completed the survey questions. The LEP group had lower household income and education levels and higher incidence of public insurance. FS-ICU scores for both LEP and EP caregivers suggested high satisfaction, without significant difference between the groups. However, qualitative analysis revealed dissatisfaction for LEP caregivers related to information, inclusion, and language barriers. EP caregivers had more positive references to information and emotional connection but indicated dissatisfaction around consistency and responsiveness. 18%of LEP caregivers reported regularly attending rounds, versus 67% of the EP group (p value < .001). 39% ofLEP versus 52% of EP caregivers reported multiple daily updates, although the difference was not statistically significant. 29% of LEP respondents reported nonfluent MD/NPs using an interpreter never, rarely, or some of the time. There was no difference in satisfaction scores between LEP and EP caregivers. LEP caregivers had lower socioeconomic status based on public insurance and reported income and education level. Qualitative data allowed more nuanced understanding of communication satisfaction, which correlated with LEP caregivers' reported lower attendance at morning rounds, inconsistent interpreter use, and a trend toward less frequent provider updates.

PERCEPTIONS OF DEATH AND ATTITUDES RELATED TO DEATH WITH DIGNITY OF HEALTH PROFESSIONALS AND CAREGIVERS

Purpose: This descriptive research was conducted to determine the death perceptions and attitudes of healthcare professionals and caregivers. Method: The research was conducted with 56 health professionals and 65 caregivers working in the palliative care unit. As a data collection tool; descriptive characteristics form, "Attitudes Towards Death Scale", "Attitudes Evaluation Scale Towards Respectable Death Principles" were used. Results: The average score of health professionals on the Attitudes Towards Death Scale is 4.3849±1.29288, and the average score of caregivers is 4.4856±0.77818. The average score of health professionals on the Attitude Scale towards Dignified Death Principles is 3.9330±1.0221, and the average score of caregivers is 3.4936±1.4554. Perceptions of health professionals' Attitudes Towards Death and Principles of Dignified Death; It was found that it was affected by having children, education, and the previous loss of a relative, and caregivers were affected by the frequency of thinking about death and their level of education. It was determined that there was a positive, moderate relationship between the Escape Acceptance dimension, which is one of the sub-dimensions of the Health Professionals' Attitudes Towards Death Scale, and the Attitude Towards Respectable Death Principles (p

Understanding Psychosocial Functioning, Caregiver Burden, and Neuropalliative Care in Parkinson's Disease - A Mixed-Methods Study.

Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers' burden. The study utilizes a mixed-methods design where 50 patient-caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient-caregiver dyads to understand the needs of palliative care. It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients ( r = 0.586) and caregivers ( r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients ( r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities. The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.

Psychometric evaluation of the caring ability of the family caregivers of the patients in need of palliative care scale (CAFCPNPCS): A methodological study

Background &amp; Aim: Since family caregivers play an important role in providing care for patients in need of palliative care, it is important to focus on and examine their care ability in fulfilling the expected roles. Therefore, this study aimed to perform a psychometric evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS). Methods &amp; Materials: The present study is methodological research that evaluates the psychometric characteristics of the CAFCPNPCS by measuring face validity, content validity, construct validity (confirmatory factor analysis and divergent validity), and internal consistency in 412 family caregivers of the patients in need of palliative care, who were selected through convenient sampling. The data were analyzed using SPSS 24 and LISREL 8.8. Results: According to the confirmatory factor analysis, the 5-factor model with 31 items was confirmed with the values RMSEA=0.05, CFI=0.95, and GFI=0.88. The divergent validity was measured by the estimation of the correlation between the caring ability score with the care burden score (which was measured by Zarit Burden Interview) of the family caregivers of the patients in need of palliative care. Cronbach's alpha (α) was reported to be 0.85 for the whole scale and 0.781-0.852 for other dimensions. Conclusion: CAFCPNPCS is a valid and reliable tool that can evaluate the caring ability of the family caregivers of patients in need of palliative care. Based on the results, it is recommended to utilize this scale to determine these caregivers’ ability to provide care and to examine the effectiveness of interventions to improve the dimensions of their caring ability.

Assessing Knowledge and First-aid Practice Scores of Caregivers of Epilepsy Patients Before and After an Educational Programme in the Kingdom of Saudi Arabia

Background Although epilepsy is one of the most prevalent and severe neurologic disorders, our knowledge of its intricate pathophysiology and skills to manage are still limited. Recognising its early signs and symptoms are crucial skills for caregivers of epileptic patients to acquire. This study was aimed at assessing the effectiveness of an education programme on improvement in the caregivers’ knowledge of epilepsy and first-aid practices. The findings will assist caregivers of children with seizures who frequently experience fear and anxiety relative to their perceived confidence to manage seizures. Education to caregivers could improve their perceived level of self-efficacy. Methods A community-based, pre- and post-intervention survey was conducted at neurologic care clinics across Saudi Arabia. Data were collected using a pretested, semi-structured, interviewer-administered questionnaire. The educational intervention was aimed at disseminating information via a short talk and video demonstration of epilepsy-related first-aid good practices. Data were analysed using SPSS version 21. Results Pre-intervention survey of 586 caregivers revealed that nearly 60% had inadequate knowledge of epilepsy; this was reduced to 23.2% after education. Similarly, 84% of caregivers had inadequate knowledge of first-aid practices before the educational intervention, but this was reduced to 32.4% after that. Having resided in the Western regions was a negative predictor of good first-aid practice knowledge scores, both before and after education. A university degree or higher education was positive predictor of higher knowledge scores both before (T=-4.564; p&lt;0.001) and after education (T=-2.775; p=0.025). The oldest caregivers (&gt;50 years) exhibited a significantly lower mean first-aid practice knowledge score (F=7.771; p=0.001). Conclusion Caregivers’ general and first-aid practice knowledge were generally poor prior to but were both markedly improved after educational interventions. Targeted educational health promotion could bring awareness to those with lower levels of education and older caregivers living in particularly the Western regions of Saudi Arabia. (255 words)

Gánh nặng chăm sócbệnh nhân Parkinson có sa sút trí tuệ

Objective: Description of clinical features and assess the caregiver burden of patients with Parkinson’s disease dementia.Methods: Cross-sectional study on 50 patients diagnosed with Parkinson’s disease (PD) with dementia at the National Geriatric Hospital. PD patients were evaluated using Mini-Mental State Evaluation (MMSE), Barthel index, Parkinson’s Disease Questionnaire (PDQ-39), and Neuropsychiatric Inventory (NPI); Caregivers were evaluated using Depression Anxiety and Stress Scales (DASS21), and Parkinson’s Disease Carer Questionnaire (PDQ-carer). The study was statistically processed with SPSS 16.0 software.Results: 50 Parkinson’s patients with dementia and their main caregivers. The mean age of the study group was 74,48 ± 8,195, with a male/female ratio of ≈ 1/1,6. The mean duration of illness was 9,26 ± 4,24. The mean MMSE score of patients with dementia was 19,92 ± 4,45. There are 46 Parkinson’s patients with dementia (92%) with at least one of the behavioral and mental disorders or more. The functional ability of Parkinson’s patients with dementia according to the Barthel scale is 42,00 ± 29,71. Quality of life in Parkinson’s patients with dementia according to PDQ-39 is 49,50 ± 31,52. The prevalence of depression - anxiety - stress according to the DASS21 scale of primary caregivers for Parkinson’s patients with dementia is 67%, 70%, and 37%, respectively. The mean PDQ-carer score of primary caregivers was 74,44 ± 33,72.Conclusion: The caregiver burden for Parkinson’s patients was increased in Parkinson’s patients with dementia.