Availability and stability of palliative care for family members of terminally ill patients in an integrated model of health and social care.

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.

Mitigating the impact of family burden on psychological health in parents of children with special needs: Buffering effects of resilience and social support.

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.

Multi-dimensional influence of pediatric epilepsy on children and their families: A cross-sectional study.

OBJECTIVE: In this study, we aimed to evaluate the effects of pediatric epilepsy on family burden, parental anxiety, depression states, and quality of life of both parents and children. METHODS: The study was undertaken between March and December 2021 using an online questionnaire that included the Family Burden Scale of Disease, the 7-item Generalized Anxiety Disorder scale, the 9-item Patient Health Questionnaire, the WHO Quality of Life Scale (WHOQOL-BREF), and the PedsQL 4.0 Generic Core Scales (parent-proxy report). RESULTS: A total of 288 parents of children aged 2-18 years were included. Overall, 94.8% of the participating families experienced high levels of disease burden, 67.0% of parents suffered from anxiety states, 57.0% suffered from depression states, and 56.2% of children with epilepsy suffered from comorbid neuropsychiatric symptoms. The mean WHOQOL-BREF score for parental quality of life was 53.7 ± 12.8, while the median PedsQL score for children's quality of life was 65.4 (49.6-81.7). Parental depression states contributed the most to family burden and parental quality of life, whereas comorbidities of epilepsy contributed the most to children's quality of life. Seizure frequency significantly influenced parental anxiety states, and family burden was the most significant predictor of parental depression states. CONCLUSION: Heavy disease burden, anxiety states, and depression states are prevalent in families with children suffering from epilepsy, and most have a poor quality of life. There is a need for greater focus on the quality of life of this patient population and their caregivers, as well as increased resources to help combat anxiety, depression, and poor quality of life.

The Family Impact of Atopic Dermatitis in the Pediatric Population: Results from an International Cross-sectional Study.

OBJECTIVE: To evaluate the impact of atopic dermatitis on families of pediatric patients. STUDY DESIGN: This cross-sectional, web-based survey of children/adolescents (6 months to <18 years old) with atopic dermatitis and their parents and caregivers was conducted in 18 countries encompassing North America, Latin America, Europe, Middle East/Eurasia, and East Asia. Children and adolescents with atopic dermatitis and their parents and caregivers were identified by the International Study of Asthma and Allergies in Childhood criteria and ever being told by a physician that they had "eczema". Atopic dermatitis severity was assessed using the Patient-Oriented Eczema Measure and the Patient Global Assessment. Atopic dermatitis impact on families' lives was evaluated using the Dermatitis Family Impact questionnaire and stand-alone questions on hours of atopic dermatitis-related care (past week) and missed work days (past 4 weeks) owing to their child's atopic dermatitis. RESULTS: A total of 7465 pairs of pediatric participants with atopic dermatitis and their parents or caregivers were surveyed. Across age groups, the Dermatitis Family Impact questionnaire total score for all regions ranged from 7.1 to 8.6, 13.2 to 14.9, and 17.0 to 17.2 for Patient-Oriented Eczema Measure mild, moderate, and severe atopic dermatitis, respectively. Subscale scores showed that greater atopic dermatitis severity had a greater impact on all family life domains, including sleep and tiredness. No specific patterns or trends were observed across age groups. Time spent on childcare and missed work days increased with atopic dermatitis severity. CONCLUSIONS: Across pediatric age groups and geographic regions, greater atopic dermatitis severity was associated with a greater negative impact on physical, emotional, social, and economic components of family life.

Anxiety, depression, and quality of life in parents of children with congenital hyperinsulinism.

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.

Pilot project for a recovery-oriented, DBT-informed skill-building education course for families of adults with borderline personality, bipolar or major depressive disorders.

There are a variety of educational interventions for families who have a relative with a mental health disorder. However, for those with one or more emotion dysregulation disorders, there are limited options. This article reports on the results of a pilot project using a quasi-experimental design with a sample of 270 (intervention = 217, control = 53) to assess an intervention, Getting Off the Emotional Roller Coaster Skill-Building Family Education Course (GOER Family Course), for families coping with and managing emotion regulation disorders in a loved one which are often misdiagnosed or co-occurring. This intervention was effective in reducing caregiver burden [F(1, 120) = 12.25, p = 0.001], while improving attitudes, knowledge, and skills [F(1, 170) = 6.16, p = 0.014]. It fills an important gap in available resources for families faced with challenges and responsibilities that these disorders can present, especially when inaccurately diagnosed or receiving ineffective treatment. While there is a need for further research and adaptation to virtual learning, the preliminary results show positive effects.

Existen varias intervenciones educativas para las familias que tienen un familiar con un trastorno de salud mental. Sin embargo, para aquellos que padecen uno o más trastornos de desregulación emocional, existen pocas opciones. En este artículo se informan los resultados de un proyecto piloto usando un diseño cuasiexperimental con una muestra de 270 personas (intervención=217, de referencia=53) para evaluar una intervención llamada Bajarse de la montaña rusa emocional: curso de capacitación familiar para el desarrollo de habilidades (Curso familiar GOER, por sus siglas en inglés), orientado a familias que enfrentan y manejan trastornos de regulación emocional en un ser querido, los cuales generalmente están mal diagnosticados o son concomitantes. Esta intervención fue eficaz para reducir el agobio de los cuidadores [F (1,120 )=12.25, p=.001] y a la vez mejorar las actitudes, el conocimiento y las habilidades [F (1,170)=6.16, p=.014]. Además, llena un vacío importante en los recursos disponibles para las familias que enfrentan las dificultades y las responsabilidades que estos trastornos pueden presentar, especialmente cuando tienen un diagnóstico impreciso o reciben un tratamiento ineficaz. Si bien es necesario continuar investigando y adaptarse a la enseñanza virtual, los resultados preliminares indican efectos positivos.

Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review.

Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre-established inclusion criteria. Main findings and study quality were reviewed. Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well-being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health-related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. Patients and families on VAD therapy experience significant difficulties in psychological well-being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long-term VAD therapy.

Moving beyond family: unequal burden across mental health patients' social networks.

PURPOSE: Although the family burden of mental health problems on patients' close relatives was widely acknowledged, little was known about how mental health problems affected the quality of life of other types of social relationships of patients, through what mechanisms, and under what conditions. The study aims to explore the burden on all types of relationships of mental health patients and explain why and when the burden is unequal across different relationships. METHODS: The association between different types of relationships and the levels of burden was examined with dyadic data of 1178 patient-acquaintance relationships in the United States and random effects multilevel models. Frequency of contacts was tested as a mediator. The severity of mental health problems was tested as a moderator. RESULTS: All types of relationships of patients borne a significant burden. Close relatives including parents, spouses, children, and siblings suffered a greater burden than distant relatives and non-relatives. The unequal burden was partly explained by the frequency of contacts with patients. The burden of close relatives significantly increased when patients' mental health problems were more severe. CONCLUSION: Mental health patients put a burden on their frequent contacts outside core families, especially when their problems were more severe. Public health policies should attend to the quality of life of mental health patients' all types of acquaintances in the wider society.

The Burden of Autosomal Recessive Congenital Ichthyoses on Patients and their Families: An Italian Multicentre Study.

Autosomal recessive congenital ichthyoses (ARCI) are characterized by generalized skin scaling, hyperkeratosis, erythroderma, and disabling features affecting the skin (palmoplantar keratoderma, fissures, pain, itch), eyes, ears, and joints. Disease severity and chronicity, patient disfigurement, and time and costs required for care impose a major burden on quality of life. This multicentre cross-sectional study investigated the impact of ARCI on quality of life of patients and families, using the Dermatology Life Quality Index (DLQI), the Children DLQI (CDLQI) and Family Burden of Ichthyosis (FBI) questionnaires. Disease severity was assessed by a dermatologist. A total of 94 patients were recruited, of whom 52 (55.3%) children. Mean age was 20.1 (median 13.5) years. The mean CDLQI/DLQI score was 7.8, and 21 patients scored >10, indicating a major impairment in quality of life: symptoms, feelings and treatment problems were the most affected domains of quality of life. FBI showed a major repercussion on psychological factors and work. The results of this study highlight the impact of ARCI on specific aspects of patient and family life, underlining the need for psychological support.

The Burden on Carers with Multiple Sclerosis.

BACKGROUND: The family members of patients with multiple sclerosis (MS) are called to become carers, playing a vital and difficult role in supporting the patients in their daily life. The aim of this study was to investigate the extent of the multidimensional burden on the carers of multiple sclerosis. METHODS: Data were collected from 111 carers with MS patients. The survey was conducted in Patras General Hospital. RESULTS: According to the research findings, the multidimensional burden of carers is proportional to the severity of the patient's condition. In particular, the majority of patients were in a good kinetic state, so the carers examined felt gentle with a moderate burden. On both scales, Zarit and BAKAS, it was observed that the age of the caregiver, the type of care he provides, and the patient's dependence on him increase the feeling of the burden. Positive results from care improve the caregiver's relationship with the patient, his self-esteem, and his ability to cope with stress. According to the F-COPES scale, it is observed that the relationship between the caregiver and the patient is responsible for accepting the problem; the greater the caregiver's age, the higher the percentage of those seeking help from doctors, social services. CONCLUSIONS: The burden on carers is indisputable; support from family members, social and economic support, and education may mitigate the burden of care.

Quality of life improvement in children with attention-deficit hyperactivity disorder reduces family's strain: A structural equation model approach.

OBJECTIVES: The objective of the study is to analyse how the quality of life of children diagnosed with attention-deficit/hyperactivity disorder (ADHD) impacts the relationship between disease severity and family burden. METHOD: The data collected by a longitudinal, observational study involving 1478 children with ADHD residing in 10 European countries (aged 6 to 18 years) were analysed to evaluate the relationships between ADHD severity, the children's quality of life and family burden. RESULTS: The disorder's severity directly and indirectly affected the children's health-related quality of life (HRQoL) and family burden. The degree of family burden was modulated by the children's HRQoL. CONCLUSIONS: One of the primary causes of the stress experienced by parents of children with ADHD is their perception of the child's reduced HRQoL and not the symptom severity itself. Efforts to minimize symptom severity cannot alone reduce family burden.

Lived Experience of Jordanian Parents Having a Child with Duchenne Muscular Dystrophy.

BACKGROUND: Duchenne muscular dystrophy (DMD) is a congenitally inherited disease characterized by progressive muscle damage and loss of function in children, which currently has no cure. Parents of children with DMD go through significant challenges when caring for a child with this condition. PURPOSE: The aim of this study was to explore the lived experience of Jordanian parents caring for a child with DMD. DESIGN AND METHODS: We utilized qualitative, descriptive, phenomenological design. Ten pairs of parents of children with DMD were interviewed at their homes from the southern region of Jordan. The Participant verbal as well as nonverbal cues were recorded during the interview. Data were analyzed using Colaizzi's 7-step method. RESULTS: Parents experienced psychosocial, emotional, and financial problems, which affected family dynamics and the quality of life. Themes emerged were face the new disease, caring for our child and handling the situation, staying in contact with the outside world, and career options and opportunities. CONCLUSIONS: Parents experienced feelings of stress and anxiety mixed with emotions of hopelessness. Parents relieved anxiety by sharing feelings with others, assuring themselves and accepting the reality of child's illness. PRACTICE IMPLICATIONS: It is necessary that parents undergo psychological counseling individually or by joining groups who had similar experiences. Follow-up by experts through the coping process. Addressing equity services in the country is necessary.

Economic Distress in Families with a Member Suffering from Severe Mental Illness: Illness Burden or Financial Crisis? Evidence from Greece.

The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica. Relatives completed a self-reported questionnaire consisting of the Index of Personal Economic Distress, the Family Burden scale and the Family Rituals scale. Information on financial strategies for tackling recession and income loss due to the recession was also gleaned. Regarding economic distress, only 15% had frequent difficulty meeting routine financial demands in their household. The preponderant strategy was spending savings (56.8%). Income category and spending less on basic needs were the main predictors of economic distress. Objective poverty indices rather than burden predicted economic distress to a greater extent.

Coping With Information Style, Self-Concealment, Internalized Stigma, and Family Burden Among Parents of Children With Psychiatric Disorders.

Parents of children with psychiatric disorders who are hospitalized in a psychiatric unit often experience family burden. Family burden has been found to be affected by many variables related to parents' personal traits and ways of reacting to the disorder. The current study examined the association between information coping styles (monitoring and blunting) and family burden, among parents of children who were hospitalized in a day care unit. The possible role of self-stigma as a mediator between coping style and family burden and the role of self-concealment as a moderator between coping style and self-stigma were examined. A total of 41 parents completed questionnaires assessing their levels of self-stigma, information coping style, self-concealment, and family burden. Self-stigma was found to mediate the positive association between the monitoring coping style and family burden. Moreover, a moderation effect of self-concealment was found, indicating that monitoring parents suffered from higher levels of self-stigma particularly if they had a high tendency toward self-concealment. Taking into account parents' information, coping style, self-stigma, and self-concealment can help professionals tailor family interventions according to parents' diverse needs. A monitoring coping style may not be beneficial especially when combined with concealment, suggesting the need to promote other coping styles.

Los padres de niños con trastornos psiquiátricos que están internados en una clínica psiquiátrica con frecuencia sufren agobio familiar. Se ha descubierto que el agobio familiar está afectado por muchas variables relacionadas con las características personales de los padres y las maneras de reaccionar al trastorno. En el presente estudio se analizó la asociación entre los estilos de afrontamiento de la información (supervisión y evitación) y el agobio familiar entre padres de niños que estaban internados en un hospital de día. Se examinó el posible rol del autoestigma como mediador entre el estilo de afrontamiento y el agobio familiar, y el rol del autoocultamiento como moderador entre el estilo de afrontamiento y el autoestigma. Un total de 41 padres contestaron cuestionarios donde se evaluaron sus niveles de autoestigma, el estilo de afrontamiento de la información, el autoocultamiento y el agobio familiar. Se descubrió que el autoestigma medió la asociación positiva entre el estilo de afrontamiento de supervisión y el agobio familiar. Además, se descubrió un efecto moderador del autoocultamiento, lo cual indica que los padres supervisores sufrían de niveles más altos de autoestigma, particularmente si tenían una alta tendencia hacia el autoocultamiento. Tener en cuenta el estilo de afrontamiento de la información, el autoestigma y el autoocultamiento de los padres puede ayudar a los profesionales a adaptar las intervenciones familiares de acuerdo con las distintas necesidades de los padres. Es posible que un estilo de afrontamiento de supervisión no sea beneficioso, especialmente si está combinado con el ocultamiento, lo cual sugiere la necesidad de promover otros estilos de afrontamiento.

Impact of Atopic Dermatitis in Adolescents and their Parents: A French Study.

Atopic dermatitis has a negative impact on quality of life in patients and their families. However, there have been very few studies of the impact of atopic dermatitis on adolescents and their relatives. The objective of this study was to evaluate the impact of atopic dermatitis in the daily lives of adolescents between 12 and 17 years of age in the French population and to assess the burden of the disease on their families. Quality of life was measured in 399 parents of adolescents with atopic dermatitis and in the adolescents themselves. Impairment of quality of life in the adolescents was associated with disease severity. Moreover, in children aged 12-14 years, quality of life was worse with increasing age, with decreasing disease duration, and when parents had atopic dermatitis. In children aged 15-17 years quality of life was worse when the parent who answered the questionnaire was male and when the parent was < 45 years old. The burden of atopic dermatitis was higher in parents of older children, in parents with children with higher disease severity, with shorter disease duration, in male parents, and in parents aged <45 years. The burden of atopic dermatitis in adolescents and their parents is considerable and should be taken into account in the management of atopic dermatitis.

Parental Efficacy Moderates the Association Between Empathy and Burden Among Parents of Children Admitted to a Psychiatric Ward.

Empathy is considered a positive aspect of caregiving, although in certain circumstances, being empathic might increase the burden of caregivers. The current study assessed the associations between empathy, parental efficacy, and family burden among parents of children who were hospitalized in a psychiatric unit. Specifically, we examined whether the association between empathy and family burden was moderated by the parents' sense of self-efficacy. Seventy parents of children with psychiatric disorders, hospitalized in an inpatient psychiatric unit, filled out questionnaires of empathy, parental efficacy, and family burden. Results supported a moderating role of parental efficacy between empathy and family burden (interaction effect: ß = -1.72, p = .0406). Specifically, empathy was positively related to family burden among parents with low self-efficacy (conditional effect = 0.70, p = .032) and negatively related to family burden among parents with high self-efficacy (conditional effect = -0.39, p = N.S). Implications for practice include the importance of self-efficacy and address the possible negative implications of empathy among parents of children treated in a psychiatric hospital.

Burdens experienced and perceived needs of relatives of persons with SMI - a systematic meta-synthesis.

Background: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI.Aim: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI.Methods: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted.Results: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated.Conclusions: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind.

Determining a cutoff score for the family burden interview schedule using three statistical methods.

BACKGROUND: While it is widely acknowledged that family burden can be ameliorated with effective psycho-social interventions, how to measure family burden and define a valid cutoff to identify family caregivers in need of such interventions remains a key question. The purpose of the present study was to determine a statistically valid cutoff score for the Family Burden Interview Schedule (FBIS), using the cutoff scores of the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder Scale (GAD-7) as the reference. METHODS: The FBIS, PHQ-9, and GAD-7 were administered to a representative community sample of 327 family caregivers of schizophrenia patients. A FBIS cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression. Contingency analysis was conducted to compare the FBIS cutoff with depression and anxiety scale scores. RESULTS: Findings proposed a cutoff score of 23 for the FBIS, with sensitivity being 76% for PHQ-9 and 74% for GAD-7, specificity being 68% for PHQ-9 and 67% for GAD-7. CONCLUSION: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life.

Burden and Psychological Distress of Intensive Care Unit Caregivers of Traumatic Brain Injury Patients.

AIM: Admission to Intensive Care Unit (ICU) is a stressful event and unforeseen crisis for the caregivers. Burden and psychosocial distress among caregivers in the ICU were unexplored. Therefore, the current study was aimed to assess the caregivers' burden and psychological distress among caregivers of traumatic brain injury (TBI) patients at emergency ICU during hospitalization. MATERIALS AND METHODS: A total of 60 caregivers recruited by using purposive sampling method with descriptive research design. Consent was obtained. Interview schedule of family for depression, anxiety, stress scale (DAS-21) were administered. The data were analyzed by using SPSS. Descriptive statistics and independent burden t-test were used. RESULTS: Results revealed that male caregivers (75%) and female caregivers (25%) took part in the study. Caregivers' mean age was found to be 35.22±11.29 years. Most of the TBI survivors admitted in ICU had severe injury (8.30±3.63). Mean scores showed that caregivers had experienced financial burden (6.28±2.36), severe depression (12.15±4.84), and a moderate level of anxiety (12.85±5.20). Independent t-test showed significant difference in caregiving burden between male and female caregivers at ICU (Male = 18.43±4.83; Female = 14.29±4.83; t = 2.16; p <0.035). Overall, caregivers experienced higher family burden and severe psychological distress at ICU. CONCLUSION: There is an immediate need to assess psychological distress and family burden of caregivers at ICU and provide timely psychosocial intervention. HOW TO CITE THIS ARTICLE: Kanmani TR, Thimmappur RM, Birudu R, Reddy KN, Raj P. Burden and Psychological Distress of Intensive Care Unit Caregivers of Traumatic Brain Injury Patients. Indian J Crit Care Med 2019;23(5):220-223.

A tailored relocation stress intervention programme for family caregivers of patients transferred from a surgical intensive care unit to a general ward.

AIMS AND OBJECTIVES: To develop and examine a relocation stress intervention programme tailored for the family caregivers of patients scheduled for transfer from a surgical intensive care unit to a general ward. BACKGROUND: Family relocation stress syndrome has been reported to be similar to that exhibited by patients, and investigators have emphasised that nurses should make special efforts to relieve family relocation stress to maximise positive contributions to the well-being of patients by family caregivers. DESIGN: A nonequivalent control group, nonsynchronised pretest-post-test design was adopted. METHODS: The study subjects were 60 family caregivers of patients with neurosurgical or general surgical conditions in the surgical intensive care unit of a university hospital located in Incheon, South Korea. Relocation stress and family burden were evaluated at three times, that is before intervention, immediately after transfer and four to five days after transfer. RESULTS: This relocation stress intervention programme was developed for the family caregivers based on disease characteristics and relocation-related needs. In the experimental group, relocation stress levels significantly and continuously decreased after intervention, whereas in the control group, a slight nonsignificant trend was observed. Family burden levels in the control group increased significantly after transfer, whereas burden levels in the experimental group increased only marginally and nonsignificantly. No significant between-group differences in relocation stress or family burden levels were observed after intervention. CONCLUSIONS: Relocation stress levels of family caregivers were significantly decreased after intervention in the experimental group, which indicates that the devised family relocation stress intervention programme effectively alleviated family relocation stress. RELEVANCE TO CLINICAL PRACTICE: The devised intervention programme, which was tailored to disease characteristics and relocation-related needs, may enhance the practicality and efficacy of relocation stress management and make meaningful contribution to the relief of family relocation stress, promote patient recovery and enhance the well-being of patients and family caregivers.