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Background: Caring for people with mental illness requires a significant investment of personal physical, mental, social, and financial resources, which greatly impact the daily lives of caregivers. The process of providing care is multifaceted and intricate, involving both positive and negative emotional responses. Burden of care is a term used to describe the negative effects of caregivers' burden on their physical, psychological, social, and economic well-being. Therefore, the aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of burden of care among people with mental illness in Africa. Methods: In this study, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), which is a suitable guideline for reports of systematic reviews and meta-analyses. The PROSPERO protocol number for this review is CRD42024499138. To find publications for the systematic review and meta-analysis, we used PubMed, MEDLINE, EMBASE, Cochrane Library, and Scopus databases. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias. Results: We have included 12 studies conducted in African countries with 2156 study participants, of whom 1176 (54.55%) were female individuals. In this meta-analysis, the pooled prevalence of burden of care among caregivers of people with mental illness in Africa was 61.73 (95% CI: 51.25–72.21%). Further, in subgroup analysis regarding the study country, the pooled prevalence of carer burden among caregivers of people with mental illness in Egypt and Nigeria was 79.19% and 55.22%, respectively. Conclusion: This review found a high pooled prevalence of caregiver burden related to mental illness in Africa. To minimize the challenges faced by individuals with mental illnesses, as well as the burden on their caregivers, stakeholders may find these findings useful for addressing prevention, early screening, and management. [ABSTRACT FROM AUTHOR]

Abstract Background Caring for people with mental illness requires a significant investment of personal physical, mental, social, and financial resources, which greatly impact the daily lives of caregivers. The process of providing care is multifaceted and intricate, involving both positive and negative emotional responses. Burden of care is a term used to describe the negative effects of caregivers’ burden on their physical, psychological, social, and economic well-being. Therefore, the aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of burden of care among people with mental illness in Africa. Methods In this study, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), which is a suitable guideline for reports of systematic reviews and meta-analyses. The PROSPERO protocol number for this review is CRD42024499138. To find publications for the systematic review and meta-analysis, we used PubMed, MEDLINE, EMBASE, Cochrane Library, and Scopus databases. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias. Results We have included 12 studies conducted in African countries with 2156 study participants, of whom 1176 (54.55%) were female individuals. In this meta-analysis, the pooled prevalence of burden of care among caregivers of people with mental illness in Africa was 61.73 (95% CI: 51.25–72.21%). Further, in subgroup analysis regarding the study country, the pooled prevalence of carer burden among caregivers of people with mental illness in Egypt and Nigeria was 79.19% and 55.22%, respectively. Conclusion This review found a high pooled prevalence of caregiver burden related to mental illness in Africa. To minimize the challenges faced by individuals with mental illnesses, as well as the burden on their caregivers, stakeholders may find these findings useful for addressing prevention, early screening, and management.

Objective To explore the current situation and influencing factors of the family burden of patients with severe mental disorders. Methods The main guardians of 715 patients with severe mental disorders in Qingyang City were selected as the research object by the multi-stage stratified cluster random sampling method. A self-made questionnaire was applied to investigate the guardian's demographic data, family situation, health status, patient demographic data, and disease treatment. The current situation of family burden was investigated by the Family Burden Scale (FBS). Multiple linear regression analysis was applied to analyze the influencing factors of family burden for patients with severe mental disorders. Results The total FBS score was 22.36 ± 13.11, and the burden of medium and above accounted for 50.57%. The financial burden on the family was the heaviest. The results of multiple linear regression analysis revealed that the patient's education level, marital status, monthly medication expenses, current condition, medication adherence, medical security, guardian's health status, relationship with the patient, cohabitation time, and monthly family income were the influencing factors of family burden (P < 0.05). Conclusion The family burden of patients with serious mental disorders in Qingyang City is relatively heavy. Families with unstable patient conditions, high monthly medication expenses, low household income, guardians in sub-health or suffering from chronic disease, and long-term living with the patient require further attention. Providing these families with assistance and support is essential to alleviating their burden. [ABSTRACT FROM AUTHOR]

Accessible Summary What is known about the subject What the paper adds to existing knowledge What are the implications for practice Introduction Aim Method Results Discussion Implications for Practice Caring for a family member with a mental illness induces a burden on the caregiver, an impact on their quality of life and premature ageing of more than ten years. We conducted systematised and individualised nursing interviews with family members, on the first days of a relative’s hospitalisation, during hospitalisation and three months after discharge. We observed persistent depressive symptoms during and after hospitalisation. Burden and depression were higher, and quality of life was lower, for women caregivers and when the caregivers admitted the patients involuntarily in the hospital ward. When the caregivers were experiencing a patient’s first hospitalisation, we also found higher depressive symptoms and lower quality of life. This study emphasises the need for new interventions such as psychoeducation to alleviate the suffering of families. Considering the burden of families could become a prevention objective from the patient’s first hospitalisation and prevent them from mental or physical health problems. The burden consequent to providing care to patients with psychiatric chronic conditions is often overlooked by health professionals.We assessed the impact of patients' psychiatric hospitalisation on their caregivers, through evaluating their suffering, burden and quality of life, in three stages: upon the patients' admission, their discharge and 3 months after their discharge.In total, 127 caregivers of adult patients whose first hospitalisation was less than 5 years ago were assessed using the 36‐item Short‐Form Health Survey, the Zarit Burden Interview and the Center for Epidemiologic Studies Depression scale.Females and caregivers who admitted patients against their will experienced higher burden and depression and lower mental quality of life. We also found higher depressive symptoms and lower quality of life among caregivers during a patient's first hospitalisation. The caregiver's familial relationship to the patient was not associated with these outcomes. Finally, burden decreased and quality of life increased over time.Results suggest that several variables associated with patient hospitalisations were correlated with burden, depression or quality of life.Burden could be targeted with interventions such as group psychoeducation for caregivers during or after the patient's hospitalisation, in order to reduce their distress and improve their quality of life. Psychiatric and mental health nurses can provide support to caregivers with systematic assessments of their burden and quality of life, so as to better meet their needs and promote their ability to cope with mental illness. [ABSTRACT FROM AUTHOR]

Aim: The study aims to determine the level of family burden and psychological symptoms in mothers who have children with Cerebral Palsy (CP) in Turkey. Methods: The descriptive study was completed with 200 mothers of children with CP. Results: Depression was found in mothers (1.11 ± 0.79) and the Family Burden Assessment Scale (FBAS) mean score was also high (143.71 ± 22.68). A statistically significant difference was found between mothers who received support to care for their children and their level of depression (p = 0.003). A positive and significant relationship was also found between emotional burden and psychiatric symptoms, such as anxiety, depression, negative self-perception, somatization, and hostility (r = 0.458, p = 0.001; r = 0.552, p = 0.001; r = 0.494, p = 0.001; r = 0.376, p = 0.001; r = 0.404, p = 0.001), respectively. A weak and positive relationship was determined between time requirement and psychiatric symptoms, such as anxiety, depression, and negative self-perception (r = 0.166, p = 0.019; r = 0.259, p = 0.001; r = 0.223, p = 0.001, respectively). Conclusion: The main factor affecting depression in caregivers was lack of support. As the mothers' emotional burden increases, their psychiatric symptom scores also increase. In our study, mothers' anxiety, depression, and negative self-perception scores increase as their time requirements increase. Mothers should be supported with certain interventions, such as education and instruction, to meet the necessities while caring for their children. Policymakers should support mothers with low-income levels to ensure that the required services reach their recipients. Psychological support and counseling services can be provided to the children and mothers following the diagnosis of CP. [ABSTRACT FROM AUTHOR]

Aim: The number of older adults with chronic diseases is growing. When caring for and accompanying their family members, the quality of life (QoL) of elderly family caregivers is highly affected. The aim is to find the relationship between family burden, family environment, and QoL among caregivers of older adults with chronic diseases. Methods: The study involved 409 caregivers in Samarinda (East Kalimantan), Makassar, and Gowa (South Sulawesi), Indonesia. It analyzed family burden, family environment, and QoL using descriptive, Spearman, Kruskal--Wallis, Mann--Whitney, and hierarchy regression analysis using SPSS version 21. Results: Family burden was negatively associated with QoL physical domain (r = -0.05, p = 0.26), psychological domain (r = 0.05, p = 0.31), and social domain (r = -0.02, p = 0.55), Family burden was positively associated with QoL environmental domain (r = -0.09, p = 0.05). Family environment was positively associated with QoL physical domain (r = -0.24, p = 0.00), psychological domain (r = 0.39, p = 0.00), social domain (r = 0.30, p = 0.00), and environmental domain (r = 0.41, p = 0.00). Hierarchy regression analysis shows that family environment has a tremendous positive correlation on QoL physical domain (β = 0.21, p = 0.00), psychological domain (β = 0.31, p = 0.00), social domain (β = 0.23, p = 0.00), and environmental domain (β = 0.33, p = 0.00). Conclusion: Family burden and family environment are crucial factors in the QoL of caregivers of older adults with chronic diseases. Family and public health nurses should develop interventions to relieve the burden and enhance family environments, ultimately improving caregiver's QoL. [ABSTRACT FROM AUTHOR]

Background: In recent years, the evaluation of disability in people with severe mental health disorders has grown in importance. Caregivers of individuals with chronic psychiatric diseases face a multitude of psychological challenges. The burden of care is the aggregate term for these challenges. The assessment of burden has become particularly important with the emergence of deinstitutionalization and the treating individuals in the community. Objective: The objective was to study the level of disability and family burden among family caregivers of individuals with schizophrenia and obsessive–compulsive disorder (OCD). Materials and Methods: A total of 120 patients (60 with schizophrenia and 60 with OCD) diagnosed as per the International Classification of Diseases-10 were selected purposively from a mental health institute in North India. The Indian Disability Evaluation and Assessment Scale was used for measuring disability, and the Family Burden Scale was administered to know the level of family burden. Results: Twenty-six percent of individuals with schizophrenia had a profound level of disability, and about 45% of individuals had a severe level of disability from both the groups; more than half (53%) of the OCD individuals reported moderate-level disability. The family burden was found high (53%) to moderate (46%) in both the groups. Conclusion: Although individuals with schizophrenia had more severe disability and family burden, individuals with OCD were not too far behind. A holistic management plan should address these parameters in addition to symptomatic recovery. Thus, the management planning should consider yielding better outcomes in both conditions.

Abstract Background Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. Aims To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. Methods This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. Results In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family’s burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. Conclusion The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.

Background: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. Aims: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. Methods: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. Results: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. Conclusion: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults. [ABSTRACT FROM AUTHOR]

Understanding affiliate stigma and its impact on family of people living with schizophrenia (PLS) in China is important for culturally informed intervention. This study aims to describe the pattern of affiliate stigma of family members of PLS in China and investigated the association between affiliate stigma and family burden. PLS and their family members dwelling in community were randomly recruited from four cities across China and completed measures of affiliate stigma and family burden. Linear regression analyses were used to determine the association between affiliate stigma and family burden. A total of 493 dyads of family member and PLS were include in this study. The mean affiliate stigma in family members was 2.21 (SD = 0.61). The vast majority of family members reported the feeling of inferiority, helpless and sad because of their family members' schizophrenia, but few family members refusing to communicate or contact with the PLS. The mean score of overall family burden was 22.25 (SD = 14.90), with 98 % of participants reported moderate or severe burden. A higher level of affiliate stigma was associated with more family burden (b = 7.837, 95CI: 5.240 to 8.747). Affiliate stigma was significantly associated with family daily activities, entertainment activities, family relationship, physical health and mental health of family members, but not family economic burden. A higher level of affiliate stigma was associated with more family burden among family with PLS. Anti-stigma intervention of mental illness should be consider not only PLS but also their family members. [ABSTRACT FROM AUTHOR]

Background: Mental illness is a leading cause of global burden of disease among both general and deaf persons. Family burden is viewed as the non-mediated effect on families living with and caring for a relative affected by mental illness. Family burden positively affected caregivers financial, physical, mental, and social well-being. To alleviate impact of burden proper coping skills to be implemented by caregivers. Aim: To assess caregivers' burden and to correlate with coping skills among caregivers. Materials & Methodology: A cross sectional study carried out at SCB medical college, a tertiary care hospital of Odisha with 120 voluntary participants. This study was conducted by collecting data from caregivers by applying Family burden interview schedule and brief COPE inventory questionnaires. Statistical analysis was done on categorical variables, and they were expressed as frequencies and percentages. Continuous variables were measured using mean and standard deviation. The correlation between caregiver burden and the various coping skills was done by using Pearson's correlation test. Results: Severe burden accounted for 60% and moderate for 40%. The highest amount of burden was seen in the areas of physical, financial, mental health, and in areas of external support. The brief COPE showed that the most often used coping styles were practicing religion, problem solving, active coping, and planning. Conclusion: We concluded that caregivers for people with mental illnesses is extremely burdensome. Female caregivers having more burden than male caregivers. Therefore, it's important to come up with helpful strategies, like giving them access to counselling services and a support system. Patients with mental illnesses may also have less relapse prevention as a result. [ABSTRACT FROM AUTHOR]

Abstract Background Traumatic brain injury (TBI) is a significant cause of mortality and morbidity worldwide. With survivors often exhibiting degrees of function loss, a significant burden is exerted on their caregivers. The purpose of this study was to explore the predictive factors of caregiver burden among caregivers of patients with TBI. Methods Sixty-eight family members of individuals with a TBI who had been admitted to three hospitals were assessed in terms of caregiver burden using the Zarit Burden Interview. The association of caregiver burden with patients’ baseline cognitive function according to the Montreal Cognitive Assessment (MoCA) test, as well as caregivers’ sociodemographic characteristics, were evaluated using multiple regression analysis. Results Based on the multiple regression model, the MoCA score of the patients (std β=-0.442, p

Background and Aims: There is limited research on the impact of COVID-19 pandemic on caregivers of patients with severe mental illness (SMI) during its late phase when sufficient and widespread knowledge about management and preventive aspects existed. We aimed to assess the impact of COVID-19 pandemic on caregivers of patients with SMI during Omicron wave. Methodology: We assessed 100 caregivers of patients with preexisting SMI diagnosed on the Diagnostic and Statistical Manual of Mental Disorders-5, 50 each of schizophrenia and related psychotic disorders (SCZ) and bipolar disorder (BD) from December 14, 2021, to February 9, 2022. We assessed symptoms of depression, anxiety, stress, and family burden in caregivers and their coping strategies by the Depression, Anxiety, and Stress Scale-21 Hindi version, Family Burden Interview Schedule (FBIS), and Brief-Coping Orientation to Problem Experienced, respectively. Results: Caregivers of SMI experienced symptoms of depression (51%), anxiety (72%), and stress (13%), with significantly more symptoms of depression (P = 0.002) and anxiety (P = 0.025) in caregivers of SCZ. High caregiver burden (score: 25.76, > half of the total score on FBIS) was found with no significant difference in the two groups. Caregivers of SCZ used a greater number of emotion-focused coping strategies, whereas those with BD used more problem-focused coping, but the difference was not significant. A significant association was seen between coping strategies of substance use and depressed symptoms (P = 0.003), substance use and anxiety symptoms (P = 0.007); anxiety symptoms with denial (P = 0.001) anxiety symptoms and venting (P = 0.008) in caregivers of BD. Conclusion: Caregivers of patients with preexisting SMI experienced depression, anxiety, and high family burden during Omicron wave. They used both emotion- and problem-focused coping strategies.

The study's aim was to determine the prevalence of depression and anxiety in children with Beckwith–Wiedemann syndrome (BWS) and their effects on social relationships and family acceptance. The Pediatric Symptom Checklist—35 items (PSC-35), Screen for Child Anxiety Related Emotional Disorders (SCARED), and the Vineland Adaptive Behavior Scale Second Edition (VABS-II) were administered to the children. The parental Acceptance Rejection/Control Questionnaire (PARQ/Control) and Zarit Burden Inventory (ZBI) were administered to parents. In total, 6 patients and 10 parents were included. Patients showed a significant presence of internalizing behavior in PSC-35 (mean, 7.66 ± 3.67), anxiety symptoms (SCARED: mean, 46.33 ± 17.50) and socialization difficulties (mean, 90.83 ± 10.09). Parents reported a perceived good acceptance (mean, 56.33 ± 1.03) and a moderate control (mean, 24.17 ± 1.83), but the burden level was ranked moderate to severe (mean, 59.33 ± 16.78). It was found that the severity of the burden level reported by parents was related to internalizing behavior (OR = 2.000; 95% CI = 0.479–3.521; p = 0.022) and anxiety symptoms (SCARED total score: OR = 3.000; 95% CI = 1.479–4.521; p = 0.005) of children. During psychological counseling in the context of BWS treatment, it is important to identify specific resources that can support patients and families in dealing with stress and identify any critical areas that could hinder the adaptation process. [ABSTRACT FROM AUTHOR]

Background and Aims: This study examined the link between perceived family burden among parents of children with moderate and severe disabilities and their psychological health, and the potential moderating roles of resilience and social support. Methods: 256 parents completed an online questionnaire including Demographic Information Form, Family Burden Assessment Scale, General Health Questionnaire, Brief Resilience Scale, and Revised Parental Social Support Scale. Results: Results revealed negative associations between resilience, social support, and depression‐anxiety symptoms. Both resilience and social support played moderating roles in the association between family burden and psychological health. Social support buffered the negative association between family burden and psychological health, alongside psychological resilience. Discussion and Conclusion: The study highlights the negative effects of family burden on the psychological health of parents of children with disabilities, but also suggests that resilience and social support can mitigate these effects. Therefore, interventions should consider these factors to enhance the psychological well‐being of parents. [ABSTRACT FROM AUTHOR]

Background and Aims: There is limited research on the impact of COVID-19 pandemic on caregivers of patients with severe mental illness (SMI) during its late phase when sufficient and widespread knowledge about management and preventive aspects existed. We aimed to assess the impact of COVID-19 pandemic on caregivers of patients with SMI during Omicron wave. Methodology: We assessed 100 caregivers of patients with preexisting SMI diagnosed on the Diagnostic and Statistical Manual of Mental Disorders-5, 50 each of schizophrenia and related psychotic disorders (SCZ) and bipolar disorder (BD) from December 14, 2021, to February 9, 2022. We assessed symptoms of depression, anxiety, stress, and family burden in caregivers and their coping strategies by the Depression, Anxiety, and Stress Scale-21 Hindi version, Family Burden Interview Schedule (FBIS), and Brief-Coping Orientation to Problem Experienced, respectively. Results: Caregivers of SMI experienced symptoms of depression (51%), anxiety (72%), and stress (13%), with significantly more symptoms of depression (P = 0.002) and anxiety (P = 0.025) in caregivers of SCZ. High caregiver burden (score: 25.76, > half of the total score on FBIS) was found with no significant difference in the two groups. Caregivers of SCZ used a greater number of emotion-focused coping strategies, whereas those with BD used more problem-focused coping, but the difference was not significant. A significant association was seen between coping strategies of substance use and depressed symptoms (P = 0.003), substance use and anxiety symptoms (P = 0.007); anxiety symptoms with denial (P = 0.001) anxiety symptoms and venting (P = 0.008) in caregivers of BD. Conclusion: Caregivers of patients with preexisting SMI experienced depression, anxiety, and high family burden during Omicron wave. They used both emotion- and problem-focused coping strategies. [ABSTRACT FROM AUTHOR]

Abstract Background There have been few studies conducted in Africa about the burden on families of patients with schizophrenia. This study had two main objectives: assessing the burden of those families and identifying the socio-demographic factors associated with this one. Methods We included 300 participants: 150 were primary family caregivers of 150 patients with schizophrenia. A questionnaire was used to collect their sociodemographic and clinical characteristics, and their objective burden using the FBIS (Family Burden Interview Schedule). Results Patients were mostly men (n = 122, 81%), the mean age was 32.4 years ± 10.1, and more than half of the patients were psychoactive substance users. Participants (caregivers) were mostly women (n = 90, 60%). Their mean age was 51.9 ± 12.8 years, with a percentage of 62 (41%) illiteracy, while 98 (65%) were parents. The mean score of the family burden was 21.82 (0–48). The most affected categories were family routine, family interaction, and finances. The burden of families was associated with five sociodemographic variables: the female gender of the caregiver (p = 0.01), the male gender of the patient (p = 0.02), his young age (p = 0,004), his education level (p

Background: Developmental coordination disorder (DCD) is a neurodevelopmental disorder impacting 5% – 6% of children and continues into adulthood for 50% – 70% of cases. Despite the multidomain and lifelong influence of this disorder, little consideration has been given to the experiences of the family. Post-diagnostic support has been recommended however, the specific areas requiring support remain vague. Objectives: This study described the familial experiences of living with a member diagnosed with DCD. Method: A qualitative descriptive study using a phenomenological approach allowed insight into the lived experiences of families journeying with DCD. Forty-four participants representing 8 countries participated in an online questionnaire with 12 participating in an online semi-structured interview. Results: Themes generated reveal that obtaining a diagnosis and navigating the healthcare and education systems can be troublesome. Upon diagnosis, families tend to experience positive emotions such as relief. However, the daily challenges soon result in dominant negative emotional responses. DCD places significant financial burdens on families and impacts marital, parental and sibling relationships. Families often feel isolated from their communities as DCD is poorly understood. Conclusion: DCD places families at risk as daily struggles require support which targets identified motor, cognitive, academic and emotional challenges. Creating awareness in society, education and healthcare would alleviate continual frustrations. Contribution: This study provides insight into the wide-ranging impact that DCD has on families so that individualised support can be tailored, and general awareness raised. [ABSTRACT FROM AUTHOR]

Background: There have been few studies conducted in Africa about the burden on families of patients with schizophrenia. This study had two main objectives: assessing the burden of those families and identifying the socio-demographic factors associated with this one. Methods: We included 300 participants: 150 were primary family caregivers of 150 patients with schizophrenia. A questionnaire was used to collect their sociodemographic and clinical characteristics, and their objective burden using the FBIS (Family Burden Interview Schedule). Results: Patients were mostly men (n = 122, 81%), the mean age was 32.4 years ± 10.1, and more than half of the patients were psychoactive substance users. Participants (caregivers) were mostly women (n = 90, 60%). Their mean age was 51.9 ± 12.8 years, with a percentage of 62 (41%) illiteracy, while 98 (65%) were parents. The mean score of the family burden was 21.82 (0–48). The most affected categories were family routine, family interaction, and finances. The burden of families was associated with five sociodemographic variables: the female gender of the caregiver (p = 0.01), the male gender of the patient (p = 0.02), his young age (p = 0,004), his education level (p < 0.0001), and his psychoactive substance use (PAS) (p < 0.000 1). Conclusion: The three main constraints encountered by families caring for a patient with schizophrenia were disruption of daily activities, deterioration in the quality of family interactions with those around them, and lastly financial difficulties. These results highlighted the need to set up intermediary socio-medical structures, which would act as a link between conventional hospital services and families. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated the impact of the COVID-19 pandemic on mental health, quality of life, and family functioning in a sample of the general female population, exploring difficulties encountered in managing family and work responsibilities and burden of care when taking care of a loved one. This study was, moreover, aimed at investigating factors capable of influencing severe depressive symptomatology in the context of socio-demographics, traumatic events, individual vulnerability, and family functioning. Method: The sampling method used in this research was non-probability sampling. The survey took place during a Hospital Open Weekend (8–10 October 2021) organized by the National Gender Observatory on Women's Health "Fondazione Onda" on the occasion of the World Mental Health Day. Results: A total of 211 women were interviewed (mean age = 35.6, 53% living alone, more than 15% with financial difficulties, 47% exposed to the 2009 L'Aquila earthquake). More than 50% of the sample reported a higher complexity in managing their lives during the COVID-19 pandemic compared to their previous routine, with no statistically significant differences between working women and non-workers, although the latter obtained higher scores for depressive symptomatology and poorer quality of life. Compared to non-caregivers, female caregivers (22.3%) in charge of the care of loved ones affected by physical (10.9%) or psychiatric disabilities (11.4%) complained of a poorer quality of life, especially in general health perception (p = 0.002), physical function (p = 0.011), role limitations related to physical problems (p = 0.017), bodily pain (p = 0.015), mental health (p = 0.004), and social functioning (p = 0.007). Women caring for people affected by mental disorders seemed to experience a more significant worsening in vitality (p = 0.003) and social functioning (p = 0.005). Approximately 20% of the total sample reported severe depressive symptomatology. Previous access to mental health services (O.R. 10.923; p = 0.000), a low level of education (O.R. 5.410; p = 0.021), and difficulties in management of everyday lives during the COVID-19 pandemic (O.R. 3.598; p = 0.045) were found to be the main variables predictive of severe depressive psychopathology. Old age, good problem-solving skills, and ability to pursue personal goals were identified as protective factors. Conclusions: The COVID-19 pandemic underlined the need for support amongst emotionally vulnerable women with pre-existing mental health conditions, partly reflecting the cumulative effects of traumas. [ABSTRACT FROM AUTHOR]

The article explores the impact of alopecia areata (AA) on pediatric patients and their caregivers, highlighting the challenges faced by children and adolescents with this autoimmune hair loss condition. The study conducted in Türkiye with 72 pediatric AA patients aged 7-16 and their caregivers found that patients experienced difficulties with treatment, embarrassment, and self-consciousness, while caregivers reported feelings of sadness and anxiety. The research underscores the importance of measuring health-related quality of life (HRQoL) in both patients and caregivers to inform treatment decisions and raise awareness about the burden of the disease. Further validation of HRQoL measures specific to pediatric AA populations is recommended for future research. [Extracted from the article]

Background: Developmental coordination disorder (DCD) is a neurodevelopmental disorder impacting 5% – 6% of children and continues into adulthood for 50% – 70% of cases. Despite the multidomain and lifelong influence of this disorder, little consideration has been given to the experiences of the family. Post-diagnostic support has been recommended however, the specific areas requiring support remain vague. Objectives: This study described the familial experiences of living with a member diagnosed with DCD. Method: A qualitative descriptive study using a phenomenological approach allowed insight into the lived experiences of families journeying with DCD. Forty-four participants representing 8 countries participated in an online questionnaire with 12 participating in an online semi-structured interview. Results: Themes generated reveal that obtaining a diagnosis and navigating the healthcare and education systems can be troublesome. Upon diagnosis, families tend to experience positive emotions such as relief. However, the daily challenges soon result in dominant negative emotional responses. DCD places significant financial burdens on families and impacts marital, parental and sibling relationships. Families often feel isolated from their communities as DCD is poorly understood. Conclusion: DCD places families at risk as daily struggles require support which targets identified motor, cognitive, academic and emotional challenges. Creating awareness in society, education and healthcare would alleviate continual frustrations. Contribution: This study provides insight into the wide-ranging impact that DCD has on families so that individualised support can be tailored, and general awareness raised.

The mental health literacy gap has resulted in the shackling of people with mental illness by family caregivers. Although shackling violates human rights and impacts physical and psychological health, it still occurs in some countries, such as Indonesia. An in-depth study using the family function approach is needed to distinguish the components behind the application of shackling by families to find solutions to prevent shackling. Thus, this study aims to identify family functions in people with mental disorder (PWMD) care and to create a family care model for PWMD in accordance with the family function approach and recommendations for preventing shackling. This qualitative research used a phenomenological approach, involving eight participants who are family caregivers and live with their patients. Triangulation was conducted by applying interviews with four health cadres to confirmprevious information. The process of in-depth interviews and observational data collection methods was carried out until reaching data saturation. The data analysis process used Collaizi's pattern to formulate three main themes, namely confinement as the final solution for the family, the specifics of confinement, and the family's purpose for confinement. The conclusion is that shackling occurs due to a lack of understanding of the impact of shackling and the various limitations experienced, so shackling becomes the last resort when dealing with patients. Peer support is very important for families to prevent the confinement of mentally ill family members. Technological advances are an inherent need in everyday life and must support family caregivers with mental disorders. [ABSTRACT FROM AUTHOR]

This study aims to assess the efficacy of a psychoeducational family intervention (PFI) to reduce the severity of depressive symptoms and to improve psychosocial functioning and to increase social contacts in a sample of patients with major depressive disorder (MDD). The degree to which PFI will reduce patients' relapses, hospitalizations, and self-stigmatization and will improve their quality of life will also be assessed. Other secondary outcomes include the improvement of relatives' coping strategies, family burden, expressed emotions and quality of life. This non-profit, unfunded, national, multicentric randomized controlled trial with blinded outcome assessments will be carried out in 24 Italian university outpatient units. Families will be assessed at baseline and at 6, 12, and 24 months post-randomization. Our working hypothesis is that the PFIs will reduce the patients' severity of depressive symptoms, their relapses, and their hospitalizations, and that they will improve their psychosocial functioning and quality of life. We expect these results to be maintained after 12 and 24 months, albeit with a reduction in magnitude. The sample will consist of 384 patients randomized at a 1:1 ratio and stratified according to center, age, gender, and educational level. [ABSTRACT FROM AUTHOR]

Background: Dissociative disorder is a stress-related disorder usually present in adolescents and younger age groups. It is also accompanied by significant impairment in activity of daily living and family relations. Family environment and use of dysfunctional coping strategies play important roles in the initiation and maintenance of symptoms and this puts a considerable burden on the family. Objectives: This study aims to study the presence of stressors, the role of family environment, the role of family burden, and the use of coping mechanisms in persons with dissociative disorder. Materials and Method: This was a descriptive cross-sectional study in which 100 persons with a dissociative disorder were included after fulfilling inclusion and exclusion criteria from the outpatient department (OPD) of psychiatry. Results: In this study, the major part of the sample were women (87%), most were educated up to 12th standard or less than 12 years of formal education. According to stressors, 44% had family stress/problems. 77% (mostly women) had dissociative stupor. The dissociative disorder caused a considerable degree of burden on the other family members. There was a significant difference in financial burden among caregivers of persons who were married, belonging to rural areas, joint families, and from lower socio-economic classes. There was a significant difference in disruption of routine family activities, and burden in persons having a longer duration of illness. There was a significant difference found in conflict, achievement orientation, and dimensions of family environment between males and females. A significant difference in the venting of emotions, behavioral disengagement, and restraint as a coping strategy between males and females was found. Conclusion: Present study showed dissociative disorder patients cause a considerable degree of burden on family members in terms of leisure, physical, mental, financial, and routine family interrelationship domains. In personal growth and relationship dimensions, the use of dysfunctional coping strategies in the family environment has a causal effect on the symptoms of dissociative disorder patients. [ABSTRACT FROM AUTHOR]

Having a child with special needs has a significant impact on family life. While adapting to this new situation, parents often face difficulties related to the care of their children, family relations, and financial situation. The present study examined differences between family burden and spousal support perceived by mothers and fathers of children with special needs and investigated predictors of perceived family burden and spousal support. A total of 394 parents of children with disabilities (197 couples) from a large urban city in Northern Turkey participated in this survey study. Results showed the perceived family burden and spousal support differed significantly between couples. Mothers of children with special needs had significantly higher perceived family burden and significantly lower perceived spousal support in comparison to fathers. Moreover, perceived spousal support significantly predicted family burden perceived by mothers and fathers. Implications in relation to services offered to families of children with disabilities along with the recommendations for future research in this area are discussed.

Background: Dissociative disorder is a stress-related disorder usually present in adolescents and younger age groups. It is also accompanied by significant impairment in activity of daily living and family relations. Family environment and use of dysfunctional coping strategies play important roles in the initiation and maintenance of symptoms and this puts a considerable burden on the family. Objectives: This study aims to study the presence of stressors, the role of family environment, the role of family burden, and the use of coping mechanisms in persons with dissociative disorder. Materials and Method: This was a descriptive cross-sectional study in which 100 persons with a dissociative disorder were included after fulfilling inclusion and exclusion criteria from the outpatient department (OPD) of psychiatry. Results: In this study, the major part of the sample were women (87%), most were educated up to 12th standard or less than 12 years of formal education. According to stressors, 44% had family stress/problems. 77% (mostly women) had dissociative stupor. The dissociative disorder caused a considerable degree of burden on the other family members. There was a significant difference in financial burden among caregivers of persons who were married, belonging to rural areas, joint families, and from lower socio-economic classes. There was a significant difference in disruption of routine family activities, and burden in persons having a longer duration of illness. There was a significant difference found in conflict, achievement orientation, and dimensions of family environment between males and females. A significant difference in the venting of emotions, behavioral disengagement, and restraint as a coping strategy between males and females was found. Conclusion: Present study showed dissociative disorder patients cause a considerable degree of burden on family members in terms of leisure, physical, mental, financial, and routine family interrelationship domains. In personal growth and relationship dimensions, the use of dysfunctional coping strategies in the family environment has a causal effect on the symptoms of dissociative disorder patients.

Post intensive care syndrome (PICS) affects an increasing number of critical illness survivors and their families, with serious physical and psychological sequelae. Since little is known about the burden of critical illness on ICU survivor families, we conducted a prospective observational study aiming to assess this, and investigate correlations of the patients’ psychometric and health-related quality of life (HRQOL) scores with family burden.

Introduction Family burden (FB) in pediatric patients with drug-resistant epilepsy (DRE) is significantly higher than that in children with non-DRE. Epilepsy surgery is an established approach to treat DRE, and this study examines the impact of pediatric epilepsy surgery on FB. Methods We retrospectively analyzed data of families and pediatric patients with focal structural DRE treated with epilepsy surgery at our epilepsy center from April 2018 to November 2021. We examined the relationship between cognitive, behavioral, and epilepsy-specific data and the FB measured with the German version of the Impact on Family Scale before and after epilepsy surgery. Results The study cohort included 31 children with DRE at a mean age of 9 years at surgery (range = 0–16) and a mean epilepsy duration of 3 years (range = 0–14). Cognitive impairment correlated with FB in children with DRE prior to surgery. At the last assessment, 14.5 months (mean, range = 6–24) after epilepsy surgery, 87.2% of patients were seizure-free, FB values had decreased by 75.0%, and behavioral problems had decreased by 85,7%. Cognitive functions remained stable following epilepsy surgery. Conclusion In children with DRE, epilepsy surgery reduces FB. Given the considerable impact of families on the development and wellbeing of their children, the impact of epilepsy surgery should be communicated to affected families. [ABSTRACT FROM AUTHOR]

Chronic diseases, such as childhood diabetes mellitus (DM), are a complex and continuous struggle as well as a great challenge both for the children who face the disease and for their parents. DM is characterized by the complex management of therapeutic treatments, thus causing physical and psychological complications infamily members. There are many families who, upon hearing the diagnosis of their child with DM, stand still in front of these new facts as their lives change. All these unprecedented conditions cause parents intense stress and discomfort, leading them to a mental burden, as the only thing that concerns them upon diagnosis is how the family will survive in the face of the current conditions they are experiencing as well as the future of the sick child. The purpose of this brief literature review is to present the research findings related to the psychological burden of families withchildren with DM, focusing on the quality of life and stress. [ABSTRACT FROM AUTHOR]

The mental health literacy gap has resulted in the shackling of people with mental illness by family caregivers. Although shackling violates human rights and impacts physical and psychological health, it still occurs in some countries, such as Indonesia. An in-depth study using the family function approach is needed to distinguish the components behind the application of shackling by families to find solutions to prevent shackling. Thus, this study aims to identify family functions in people with mental disorder (PWMD) care and to create a family care model for PWMD in accordance with the family function approach and recommendations for preventing shackling. This qualitative research used a phenomenological approach, involving eight participants who are family caregivers and live with their patients. Triangulation was conducted by applying interviews with four health cadres to confirm previous information. The process of in-depth interviews and observational data collection methods was carried out until reaching data saturation. The data analysis process used Collaizi's pattern to formulate three main themes, namely confinement as the final solution for the family, the specifics of confinement, and the family's purpose for confinement. The conclusion is that shackling occurs due to a lack of understanding of the impact of shackling and the various limitations experienced, so shackling becomes the last resort when dealing with patients. Peer support is very important for families to prevent the confinement of mentally ill family members. Technological advances are an inherent need in everyday life and must support family caregivers with mental disorders.

The study’s aim was to determine the prevalence of depression and anxiety in children with Beckwith–Wiedemann syndrome (BWS) and their effects on social relationships and family acceptance. The Pediatric Symptom Checklist—35 items (PSC-35), Screen for Child Anxiety Related Emotional Disorders (SCARED), and the Vineland Adaptive Behavior Scale Second Edition (VABS-II) were administered to the children. The parental Acceptance Rejection/Control Questionnaire (PARQ/Control) and Zarit Burden Inventory (ZBI) were administered to parents. In total, 6 patients and 10 parents were included. Patients showed a significant presence of internalizing behavior in PSC-35 (mean, 7.66 ± 3.67), anxiety symptoms (SCARED: mean, 46.33 ± 17.50) and socialization difficulties (mean, 90.83 ± 10.09). Parents reported a perceived good acceptance (mean, 56.33 ± 1.03) and a moderate control (mean, 24.17 ± 1.83), but the burden level was ranked moderate to severe (mean, 59.33 ± 16.78). It was found that the severity of the burden level reported by parents was related to internalizing behavior (OR = 2.000; 95% CI = 0.479–3.521; p = 0.022) and anxiety symptoms (SCARED total score: OR = 3.000; 95% CI = 1.479–4.521; p = 0.005) of children. During psychological counseling in the context of BWS treatment, it is important to identify specific resources that can support patients and families in dealing with stress and identify any critical areas that could hinder the adaptation process.

This research was conducted to determine the family burden and quality of life of parents with children with disabilities. This descriptive study was carried out within special education and rehabilitation centers between the dates of October, 2017 and July, 2018. The sample of the study consisted of 518 parents. Data regarding the study were collected using the "Family Burden Assessment Scale" and "WHOQOL-BREF-TR Scale". A negative moderate and significant relationship has been detected between the physical domain and FBAS scores of the parents subjected while a negative strong and significant relationship was detected in the spiritual, social and environmental domains. It has been concluded that the quality of life has decreased as the family burden of the parents increased. In addition, family burden of parents had a negative effect on their quality of life. [ABSTRACT FROM AUTHOR]

Having a child with special needs has a significant impact on family life. While adapting to this new situation, parents often face difficulties related to the care of their children, family relations, and financial situation. The present study examined differences between family burden and spousal support perceived by mothers and fathers of children with special needs and investigated predictors of perceived family burden and spousal support. A total of 394 parents of children with disabilities (197 couples) from a large urban city in Northern Turkey participated in this survey study. Results showed the perceived family burden and spousal support differed significantly between couples. Mothers of children with special needs had significantly higher perceived family burden and significantly lower perceived spousal support in comparison to fathers. Moreover, perceived spousal support significantly predicted family burden perceived by mothers and fathers. Implications in relation to services offered to families of children with disabilities along with the recommendations for future research in this area are discussed. [ABSTRACT FROM AUTHOR]

The objective of the work was to study the prevalence of undifferentiated oligophrenia in the offspring of antenatally exposed parents. The analysis included 2,908 offspring of the Techa River antenatally exposed residents within Chelyabinsk Oblast born in the period 1974-1992. 1,705 of them were born to an antenatally exposed mother, 1,668 – to an antenatally exposed father, and 368 – to both antenatally exposed parents. Mean in-utero dose for the cohort of in-utero exposed population was 5.8 mGy, while the mean dose of mothers of oligophrenic persons was 12.6 mGy, and that of antenatally exposed fathers – 5.3 mGy. It was found that the prevalence of oligophrenia of different degrees of severity compared to the control group, which included the offspring of unexposed persons of the same age, ethnicity and living in adjacent territories, tends to increase More than 20% of cases of moderate oligophrenia in both main and control groups were of familial nature. All cases of severe oligophrenia in the compared groups were sporadic. There was an increase (p0.05. No dependence of the prevalence of oligophrenia on the maternal and paternal in-utero dose has been detected.

Purpose: This study investigated the impact of the COVID-19 pandemic on mental health, quality of life, and family functioning in a sample of the general female population, exploring difficulties encountered in managing family and work responsibilities and burden of care when taking care of a loved one. This study was, moreover, aimed at investigating factors capable of influencing severe depressive symptomatology in the context of socio-demographics, traumatic events, individual vulnerability, and family functioning. Method: The sampling method used in this research was non-probability sampling. The survey took place during a Hospital Open Weekend (8–10 October 2021) organized by the National Gender Observatory on Women’s Health “Fondazione Onda” on the occasion of the World Mental Health Day. Results: A total of 211 women were interviewed (mean age = 35.6, 53% living alone, more than 15% with financial difficulties, 47% exposed to the 2009 L’Aquila earthquake). More than 50% of the sample reported a higher complexity in managing their lives during the COVID-19 pandemic compared to their previous routine, with no statistically significant differences between working women and non-workers, although the latter obtained higher scores for depressive symptomatology and poorer quality of life. Compared to non-caregivers, female caregivers (22.3%) in charge of the care of loved ones affected by physical (10.9%) or psychiatric disabilities (11.4%) complained of a poorer quality of life, especially in general health perception (p = 0.002), physical function (p = 0.011), role limitations related to physical problems (p = 0.017), bodily pain (p = 0.015), mental health (p = 0.004), and social functioning (p = 0.007). Women caring for people affected by mental disorders seemed to experience a more significant worsening in vitality (p = 0.003) and social functioning (p = 0.005). Approximately 20% of the total sample reported severe depressive symptomatology. Previous access to mental health services (O.R. 10.923; p = 0.000), a low level of education (O.R. 5.410; p = 0.021), and difficulties in management of everyday lives during the COVID-19 pandemic (O.R. 3.598; p = 0.045) were found to be the main variables predictive of severe depressive psychopathology. Old age, good problem-solving skills, and ability to pursue personal goals were identified as protective factors. Conclusions: The COVID-19 pandemic underlined the need for support amongst emotionally vulnerable women with pre-existing mental health conditions, partly reflecting the cumulative effects of traumas.

The goal of this study was to determine if family burden experienced by the families of individuals with a recent-onset of schizophrenia is associated with whether the individual is able to work or attend school during the first year of treatment. Forty-one participants with a recent first episode of schizophrenia and their families enrolled in two NIMH-funded protocols through the UCLA Aftercare Research Program completed a measure of family burden at baseline. Amount of work during this time was also recorded. Baseline family burden was associated with work status (no work, part-time work, or full-time work) at both the six-month, r = -0.321, p = .04, and one-year time point, r = - 0.47, p = .002. Family burden was also associated with hours participated in work/school hours at the six-month time point, r = -0.390, p = .012, and at the one-year time point, r = -0.492, p = .01. Further exploration into the family burden measure shows that family perceived limited opportunities resulting from the individual's psychiatric disorder was associated with worse functional outcome at all three time points beyond psychiatric symptoms and baseline functioning. Missed opportunities due to a family member's illness may reduce the level of support provided to the individual and thus impact their psychosocial functioning. Our findings suggest that this dimension of family burden is highlighting the importance of and need for more balanced family support to boost functional outcome.

ObjectiveThe purpose of this study was to investigate the impact of the COVID-19 pandemic on the quality of life of families of children with disabilities and the mediating roles of perceived social support, perceived parental self-efficacy, psychological health, psychological resilience, and perceived family burden on this relationship.BackgroundChildren with disabilities and their families are among the most affected populations from the restrictions imposed to prevent the spread of COVID-19 virus, as the special education and rehabilitation services they had been receiving were interrupted.MethodA correlational survey design was used to collect data from 824 parents of children with disabilities in Turkey. Path analysis was used to examine the direct and indirect effects of COVID-19 on family quality of life.ResultsResults indicated that COVID-19 had a significant total effect on family quality of life and perceived social support, parental self-efficacy and psychological resilience had a mediating role on the relationship between impact of the COVID-19 pandemic and family quality of life. Perceived social support was found to the strongest mediator of the relationship between the impact of COVID-19 and the family quality of life, while perceived family burden did not have a statistically significant association with these variables.ConclusionFamily quality of life for children with disabilities decreased as the impact of COVID-19 pandemic increased. Perceived social support, parental self-efficacy and psychological resilience had mediating roles in the relationship between the impact of the COVID-19 pandemic and family quality of life.ImplicationsCOVID-19 has resulted in disruption of special education and rehabilitation services for children with disabilities and their families. Changes in daily routines have brought up additional responsibilities to parents of children with disabilities. These additional responsibilities may adversely affect and increase the burden and stress families of children with disabilities experience. The high levels of stress in families negatively affect the welfare and quality of life and result in decreased parental attention to support their children. Findings of this study show the mediating link of perceived social support, parental self-efficacy and psychological resilience in the relationship between the impact of the COVID-19 pandemic and family quality of life. Policymakers and service providers should develop and implement specific care actions to support children with disabilities and their families during and after the pandemic.

This study aims to assess the efficacy of a psychoeducational family intervention (PFI) to reduce the severity of depressive symptoms and to improve psychosocial functioning and to increase social contacts in a sample of patients with major depressive disorder (MDD). The degree to which PFI will reduce patients’ relapses, hospitalizations, and self-stigmatization and will improve their quality of life will also be assessed. Other secondary outcomes include the improvement of relatives’ coping strategies, family burden, expressed emotions and quality of life. This non-profit, unfunded, national, multicentric randomized controlled trial with blinded outcome assessments will be carried out in 24 Italian university outpatient units. Families will be assessed at baseline and at 6, 12, and 24 months post-randomization. Our working hypothesis is that the PFIs will reduce the patients’ severity of depressive symptoms, their relapses, and their hospitalizations, and that they will improve their psychosocial functioning and quality of life. We expect these results to be maintained after 12 and 24 months, albeit with a reduction in magnitude. The sample will consist of 384 patients randomized at a 1:1 ratio and stratified according to center, age, gender, and educational level.

This study aimed to assess mental health, family burden, and quality of life (PQoL) in parents of children with persistent congenital hyperinsulinism (CHI). Forty-eight individual CHI parents (75% female) completed self-reported questionnaires and screening tools for anxiety (GAD-7), depression (PHQ-8), PQoL (ULQIE), and family burden (FaBeL). Additional data on sociodemographics, social support, and child- and disease-related data were recorded. 29.8% of parents showed major depressive symptoms and 38.3% had a probable general anxiety disorder, including 20.8% who had both. The family burden was moderate and assessment of PQoL yielded average scores. Neurological impairment in an affected child (p =.002 and p <.001, respectively) and lower working hours (p =.001 and p =.012, respectively) were the strongest predictors of worse GAD-7 and PHQ-8 scores. Furthermore, lower working hours (p =.012) and comorbidities in the affected child (p =.007) were significantly associated with lower PQoL. Mothers had worse GAD-7 scores (p =.006) and lower PQoL (p =.035) than fathers. Indication of sleep disturbance was associated with worse PHQ-8 scores (p =.003), higher family burden (p =.039), and reduced PQoL (p =.003). A higher number of caretakers besides parents was associated with decreased family burden (p =.019), improved PQoL (p <.001), and lower scores for anxiety (p =.016) and depressive (p =.021) symptoms. Conclusion: Symptoms of depression and anxiety are alarmingly prevalent in parents of children with CHI. Psychological screening of parents should be initiated to ensure early identification of psychological strains and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being. What is Known: • Psychosocial strains and reduced quality of life are common in parents of chronically ill children. What is New: • In this first study evaluating mental health, family burden, and quality of life in parents of children with congenital hyperinsulinism (CHI), symptoms of depression and anxiety were alarmingly prevalent. • Parents of children with CHI should receive regular psychological screening and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being. [ABSTRACT FROM AUTHOR]

Introduction: Caring for the disabled elderly puts heavy burdens on their families. This study aimed to explore family function (FF) as a mediator in the relationship between disability severity (DS) and family burden (FB) of the Uygur and Kazakh home-dwelling disabled elderly cared for by informal caregivers in China. Method: A cross-sectional design with multistage sampling was used to recruit 431 families with Uygur and Kazakh disabled elderly in Bortala, Xinjiang, China. Data were collected using the Activities of Daily Living Scale, Family Burden Interview Schedule, and Family Adaptation, Partnership, Growth, Affection, and Resolve Index Scale and then analyzed using hierarchical regression. Results: FF had a partial mediating effect on the relationship between DS and FB (β = 0.131; 95% confidence interval [CI] = [0.074, 0.197]; p <.01); the effective rate was 41.46%. Discussion: Multidisciplinary care teams should implement targeted interventions to improve FF of the disabled elderly to alleviate FB. [ABSTRACT FROM AUTHOR]

Objective: To explore adolescent and parent perceptions of the impact of a concussion/mild traumatic brain injury (mTBI) on family functioning and activity levels in the first 4 weeks of recovery. Setting: Outpatient research setting. Participants: Twenty-seven adolescents (aged of 13-17 years) within 1 week of a concussion/mTBI and a parent/guardian were enrolled in the study. Design: Prospective ecological study with qualitative, semistructured interviews. Main Measures: Adolescents reported symptoms electronically every 2 days for 28 days via the Post-Concussion Symptom Inventory. Semistructured interviews were completed with each adolescent-parent dyad at the end of the 28-day period. Interview questions focused on perceptions of recovery progress and study procedures. Results: Symptom trajectories were variable across participants. Three main themes emerged from thematic analysis, including: (1) disruption of routines and activities, (2) injury management considerations, and (3) positive and negative influential factors (eg, school and coach support, timing of injury, and recovery expectations). Results highlighted nuances of recovery challenges that families specifically face and help emphasize the potential benefits of shared decision-making and where more guidance would be appreciated such as more specific self-management of symptoms and physical activity reintegration strategies. Conclusions: Study findings support a shared decision-making approach with the identified themes as potential topics to help consider social and environmental influences on recovery. The themes presented in the results could be topics emphasized during intake and follow-up visit processes to help guide plans of care and return-to-activity decisions. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To examine the predictive relationship between burden of caregiving and life satisfaction among the caregivers of children with Autism Spectrum Disorder (ASD) from different cities of Panjab, Pakistan. METHODS: This correlational study was conducted from January–June 2019, on 71 caregivers of ASD patients from different cities of Punjab province, registered with different autism treatment centers, Lahore- Pakistan. Informed consent was taken from caregivers, selected through purposive sampling technique. Caregiver burden scale by Zarit Burden scale was used to measure family burden while Satisfaction with life scale by Diener ED, was used to measure life satisfaction among the care givers. RESULTS: Out of 71 caregivers of children with ASD, 55 (77.5%) were females and 16 (22.5%) were males. Caregivers ranged in age from 20-55 years and majority (n=33/71: 46.5%) were from 31-40 years age group. Forty-seven (66.2%) caregivers belonged to joint family. Majority (36/71, 50.7%) of caregivers had 1-3 children and 24 (33.8%) caregivers had 4-6 children. Zarit Burden Scale has a high reliability (α=.84) and life satisfaction scale has satisfactory reliability (α=.74) for current sample. The findings of the study revealed significant negative relationship between burden of caregiving and life satisfaction (r=-0.33, p

Gender differences in behavior problems and their relationship with family burden in severe mental disorders were analyzed. The Behavior Problems Inventory (BPI) and two items related to family burden (FB 1: “Do you feel able to endure the illness or disorder and the problems it causes?” and FB 2: “How often are you overwhelmed by these behavior/illness problems?”) were administered to 235 key informants under treatment in a community mental health unit. The results show that men presented more behavior problems and family burden, with significant differences in impulse dyscontrol and severe behavior problems. A positive correlation was found between behavior problems and family burden, where the inactivity/social withdrawal dimension was the best predictor of family load for men and women. We conclude that men have more behavior problems and that the inactivity/social withdrawal dimension has the most explanatory power for family burden in both men and women.

The central theme of the paper is the fundamental possibility of using the theoretical construct of burnout in relation to relatives caring for chronically ill patients. Based on the overview of contemporary literature and the results of our empirical studies, we show that the concept of burnout differs from the concept of burden widespread in clinical psychology. One of the most relevant models for studying burnout of relatives taking care of chronically ill patients proves to be the Informal Caregiving Integrative Model (ICIM). ICIM is based on the Model of Career Stress and Burden and Job Demands-Resources Model. Analysis of the main components of ICIM (determinants, mediators, specific outcomes, general outcomes) and their circularity interactions shows the multifaceted nature of informal caregivers’ burnout. We conclude that further development of the conceptual framework and appropriate assessment tools for studying the emotional burnout of informal caregivers is necessary.

Standard assessment and management protocols exist for first episode psychosis (FEP) in high income countries. Due to cultural and resource differences, these need to be modified for application in low-and middle-income countries. To assess the applicability of standard assessment and management protocols across two cohorts of FEP patients in North and South India by examining trajectories of psychopathology, functioning, quality of life and family burden in both. FEP patients at two sites (108 at AIIMS, North India, and 115 at SCARF, South India) were assessed using structured instruments at baseline, 3, 6 and 12 months. Standard management protocols consisted of treatment with antipsychotics and psychoeducation for patients and their families. Generalised estimating equation (GEE) modelling was carried out to test for changes in outcomes both across and between sites at follow-up. There was an overall significant improvement in both cohorts for psychopathology and other outcome measures. The trajectories of improvement differed between the two sites with steeper improvement in non-affective psychosis in the first three months at SCARF, and affective symptoms in the first three months at AIIMS. The reduction in family burden and improvement in quality of life were greater at AIIMS than at SCARF during the first three months. Despite variations in cultural contexts and norms, it is possible to implement FEP standard assessment and management protocols in North and South India. Preliminary findings indicate that FEP services lead to significant improvements in psychopathology, functioning, quality of life, and family burden within these contexts. [ABSTRACT FROM AUTHOR]

(1) Background: Phenotypic diversity and long-term health outcomes of individuals with urea cycle disorders (UCDs) have been described in detail. However, there is limited information on the burden on affected families. (2) Methods: To evaluate the family burden in parents with children suffering from UCDs, we used validated questionnaires. Socio-demographic characteristics were evaluated, and an adapted version of the Parental Need Scale for Rare Diseases questionnaire was used. The survey was conducted in families of UCD patients cared for at the University Children's Hospital Heidelberg. (3) Results: From April to November 2021, 59 participants were interviewed (mothers n = 34, fathers n = 25). The affected patients most frequently suffered from ornithine transcarbamylase deficiency (OTC-D) (female n = 12, male n = 12), followed by argininosuccinate synthetase deficiency (ASS-D, n = 13) and argininosuccinate lyase deficiency (ASL-D, n = 8). About one-third of the participants were "dissatisfied" or "extremely dissatisfied" with health professionals' disease knowledge. In addition, 30% of the participants reported a medium or high need for "additional information on the development of their children", and 44% reported a medium or high need "for information on available services". A majority of 68% reported a need for additional support regarding services such as support groups (42%) or psychological counseling (29%). (4) Conclusions: Our study indicates that there is an unmet need for sufficient information about the development of children with UCDs, as well as for information about available support services for families with UCD patients. Furthermore, the results highlight the importance of establishing or improving family-centered care approaches. This pilot study may serve as a template for the assessment of the family burden associated with other inherited metabolic diseases. [ABSTRACT FROM AUTHOR]