Psychological Distress Of Family Caregivers Research Articles

Effect of an 8-Week Mindfulness Meditation Training Program on Psychological Distress in Caregivers and on Behavioral and Psychological Symptoms in People with Alzheimer’s Disease: A Randomized Controlled Trial

Abstract Objectives Mental health problems are highly prevalent in people with Alzheimer’s disease (AD) and their family caregivers. Therefore, this study aimed to examine the effects of the Mindfulness-Based Health Care Program (MBHC) on the psychological distress of family caregivers of people with AD and, indirectly, on the behavioral and psychological symptoms of dementia (BPSD) in people with AD. Method A sample of 66 caregivers of people with AD was randomly assigned to either 8 weeks of MBHC or treatment as usual (TAU) groups. The psychological distress in family caregivers, measured by the Hospital Anxiety and Depression Scale (HADS), and BPSD in patients, measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q), were evaluated and compared at baseline, post-intervention, and 3-month follow-up. Results A total of 50 participants (75.6%) completed the MBHC post-intervention and 30 (50%) at the 3-month follow-up. At post-intervention, compared to TAU, MBHC was associated with significantly greater decreases in psychological distress (β = − 3.86; 95%CI, − 7.67, − 0.04; p = 0.047), specifically in anxiety symptoms (β = − 2.84; 95%CI, − 5.38, − 0.30; p = 0.029), but no significant changes were observed in depressive symptoms. MBHC did not produce a significant change in psychological distress at 3-month follow-up. MBHC did not yield a significant reduction in BPSD in people with AD, neither at post-intervention nor at 3-month follow-up. Conclusions The results suggest that 8-week mindfulness training can effectively reduce psychological distress and anxiety symptoms in caregivers of people with Alzheimer’s disease. Preregistration This study was preregistered on ClinicalTrials.gov (identifier NCT03858283) on 26 February 2019.

FC31: Profiles of dementia caregivers according to psychosocial variables. Importance of kinship.

Objectives:Caring for a family member with dementia may have important negative psychological consequences on caregivers. The present study aims to analyze the existence of different profiles in family caregivers of people with dementia according to the levels manifested in different psychosocial variables, which are grouped into psychosocial variables (dysfunctional thoughts, familism, experiential avoidance) and resources (leisure and social support). In addition, it aims to study whether there are differences among those profiles in the levels of distress (depressive, anxious and guilt symptomatology) depending on the relationship of kinship with the cared-for person.Methods:288 family caregivers of people with dementia divided into four kinship groups (wives, husbands, sons and daughters) participated. Face-to-face interviews were conducted assessing sociodemographic variables, familism (family obligations), dysfunctional thoughts, experiential avoidance, leisure activities, perceived social support and depressive, anxious and guilt symptomatology. A hierarchical cluster analysis was performed using Ward's method and contingency tables were run between the clusters obtained and the variable of kinship and distress variables.Results:Five clusters were obtained: Low psychosocial vulnerability-High resources (mostly daughters), Low psychosocial vulnerability-Low resources (mostly daughters), Mixed (mostly sons), High psychosocial vulnerability-High resources (mostly husbands) and High psychosocial vulnerability-Low resources (mostly wives). Although with nuances, the clusters associated with lower distress are the Low psychosocial vulnerability-High resources profile and the High psychosocial vulnerability-High resources profile, and with higher distress the Low psychosocial vulnerability-Low resources profile and the Mixed profile.Conclusions:High levels of dysfunctional thoughts, familism and experiential avoidance are not always associated with greater psychological distress. In fact, profile 2 (Low psychosocial vulnerability-Low resources), in which most caregiving daughters are distributed, seems to be particularly vulnerable to presenting higher levels of emotional. Therefore, the identification of profiles of potential protection and vulnerability to psychological distress in family caregivers could help to increase the effectiveness of interventions aimed at this population.

Effect of a Mobile Training Application on Psychological Distress of Family Caregivers of Patients With Chronic Obstructive Pulmonary Disease

Objective Chronic obstructive pulmonary disease is one of the most common causes of death in the world, which affects the functional level of patients due to its progressive nature. disabilities caused by the disease lead to the dependence of these patients on family caregivers. Following the changes in caregivers’ lives, most family caregivers are exposed to psychological distress. Involving caregivers in pulmonary rehabilitation training for patients is one of the ways to reduce psychological distress. Considering the emergence of the digital age and the limitations of face-to-face training such as time and cost, mobile phone-based applications are available as one of the new methods for providing educational support to caregivers. Therefore, this study was conducted with the aim of determining the effect of the pulmonary rehabilitation application on the psychological distress of caregivers of people with chronic obstructive pulmonary disease. Materials & Methods This study is a field trial conducted on 70 family caregivers of people with chronic obstructive pulmonary disease. The samples were selected as available from the Sun Breathing Comprehensive Clinic and after checking the inclusion criteria, they were randomly assigned to intervention and control groups by minimization software. The intervention group used mobile phone-based pulmonary rehabilitation training application for 6 weeks. For the control group, face-to-face pulmonary rehabilitation training (routine) was provided in the form of 12 sessions during 6 weeks. The data collection tool included Kessler’s demographic information and psychological distress questionnaires, which were completed by caregivers before and after the intervention. Data analysis was done using SPSS version 24 software and Mann-Whitney, Chi-square and independent and paired t tests. Results According to the findings, the two groups were homogeneous in terms of demographic characteristics. The average age of caregivers in the intervention and control groups was (44.1±14.8), (47.7±13.8) years, respectively. In the intervention group, 71.4% were female caregivers and in the control group, 82.9% were female caregivers (P>0/05). Before the intervention, there was no significant difference in terms of psychological distress between the test and control groups (P<0.05), but after the intervention, there was a significant difference between the two groups in terms of psychological distress (P=0.001). The average score of psychological distress before and after the intervention in the intervention group was (14.97±6.65) and (10.25±4.50) respectively, and there was a significant decrease (P<0.000), but the psychological distress in the control group was (15.68±7.91). 5.42±14.60) had no significant change (P<0.05). Conclusion The results of this study indicate that training through a mobile-based pulmonary rehabilitation application may be useful in reducing the psychological distress of family caregivers of chronic obstructive pulmonary disease. Therefore, since the favorable mental state of caregivers has a significant effect on the quality of care provided , it is recommended to use this method in the training of caregivers of chronic obstructive pulmonary disease.

Factors Affecting Psychological Distress in Family Caregivers of Critically Ill Patients: A Qualitative Study.

Family caregivers often experience psychological distress during a critical care hospitalization, potentially compromising their ability to function effectively in a supportive role. A better understanding of the sources of family caregiver distress is needed to inform strategies to mitigate its development and impact. To explore sources of family caregiver psychological distress during a critical care hospitalization and how caregivers' experiences may differ by their anxiety level. Forty adult family members of patients receiving mechanical ventilation for more than 72 hours in 2 intensive care units at an academic medical center were interviewed. A qualitative directed content analysis was done. Experiences were compared by anxiety level group, defined using the Hospital Anxiety and Depression Scale: anxiety (n = 15), borderline anxiety (n = 11), and low anxiety (n=14). Most family members (32%) were adult children; no major demographic differences were noted across anxiety groups. Among caregivers in the anxiety group, salient factors included early unknowns around critical illness, health care team processes, care decisions made, financial and housing concerns, family dysfunction, and new responsibilities. In general, low-anxiety family caregivers did not express their concerns using language of distress but rather expressed emotion and disappointment and often took action to process their concerns. Factors influencing family caregiver distress during the critical care stay were wide-ranging and varied by level of anxiety. The findings highlight several key areas and potential interventions to reduce psychological distress, especially among caregivers with anxiety.

Factors associated with psychological distress in family caregivers: Findings from nationwide data in Japan

Family caregivers can experience psychological distress, resulting in physical and mental health problems, and discontinuation of caregiving. This study's objective was to examine factors associated with caregiver psychological distress. We analyzed data from the Comprehensive Survey of Living Conditions in 2007, 2010, 2013 and 2016, which included 12 504 pairs of caregivers and care recipients sharing a household in Japan. Kessler's Psychological Distress Scale (K6) was used to measure caregiver psychological distress. Multivariable logistic regression analyses identified factors associated with caregiver psychological distress (K6 score ≥5). Caregivers' median K6 score was 3 (interquartile range 0-7), and 38.6% had a K6 score ≥5. K6 scores ≥5 were positively associated with female sex (adjusted odds ratio 1.35, 95% CI 1.21-1.51), poor caregiver health status (compared with "very good," 9.48, 95% CI 7.91-11.37 for "not very good/poor"), longer care time (compared with "help only when needed," 1.40, 95% CI 1.25-1.58 for "almost all day") and dementia (1.16, 95% CI 1.05-1.28), lower respiratory tract disease (1.25, 95% CI 1.06-1.49) and diabetes (1.16, 95% CI 1.00-1.33) in care recipients. K6 scores ≥5 were negatively associated with older caregiver age (compared with 20-54 years, 0.65, 95%CI 0.58-0.74 for 55-64 years, 0.54, 95%CI 0.46-0.63 for 65-74 years and 0.50, 95% CI 0.40-0.62 for ≥75 years), employment (0.88, 95% CI 0.80-0.97) and being a care recipient's child-in-law (compared with spouse 0.75, 95% CI 0.61-0.92). The findings identified several factors associated with caregiver psychological distress, showing that particular attention might need to be paid to caregivers with these risk factors. Geriatr Gerontol Int 2021; 21: 855-864.

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child’s challenging behaviours, and the caregiver’s coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included ‘confusing messages and guidance’, ‘loss of freedom’ and ‘unsupported and forgotten’. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK.

Designing a need-based program for relieving psychological distress of family caregivers of leukemia patients: a randomized controlled trial.

The family of leukemia patients, due to their caring role, often feels psychological distress. A practical need-based program carefully considers the set of requirements of nursing service recipients. This paper illustrates the efficacy of a designed family-need-based program on relieving stress, anxiety, and depression of family caregivers of leukemia patients. In this controlled trial, sixty-four family caregivers of leukemia patients referring to a medical center in Iran were recruited by convenience sampling and randomly divided into study and control groups. The study group attended a designed need-based program. The control group did not receive the intervention. Stress, anxiety, and depression of both groups were simultaneously measured and compared in three time-points using the scale of stress, anxiety, and depression (DASS-42). Data were analyzed using descriptive and inferential statistics. Before the program, the average scores of stress, anxiety, and depression were 31.16 ± 4.14, 21.37 ± 6.31, and 27.56 ± 4.24 for the study group and 31.09 ± 4.48, 20.34 ± 6.56, and 28.78 ± 4.72 for the control group. After the program, the average scores of stress, anxiety, and depression were 10.56 ± 3.37, 6.75 ± 2.99, and 7.37 ± 2.76 for the study group and 34.87 ± 2.51, 23.65 ± 4.96, and 32.56 ± 3.49 for the control group, respectively. Results of the independent t test indicated no considerable difference before the program (P > 0.05) and a significant difference after the program (P < 0.001) between the two groups. This family-need-based program can decrease the level of stress, anxiety, and depression of the family caregivers of leukemia patients and may potentially alleviate the psychological distress of family caregivers over their caring role.

The role of thought suppression and psychological inflexibility in older family caregivers’ psychological symptoms and quality of life

BackgroundFamily caregivers often report high levels of distress, including depressive symptoms, anxiety, and reduced quality of life. There is a need for a greater understanding of the factors influencing, explaining, and maintaining psychological distress in family caregivers. AimThe aim of this study was to examine whether avoidance strategies such as thought suppression (WBSI), psychological inflexibility (AAQ-II), and, and caregiver experiential avoidance (EACQ) predict psychological distress (BDI-II, GAD-7) and quality of life (WHOQOL) in family caregivers aged 60 and over. We hypothesized that these avoidance strategies would explain elevated levels of psychological symptoms and lower quality of life. MethodAltogether, 149 family caregivers completed self-report measures of depressive symptoms, anxiety, quality of life, thought suppression, psychological inflexibility and caregiver experiential avoidance. We conducted correlation and regression analyses to assess the associations and the predictive ability of these constructs. ResultsTogether, psychological inflexibility and thought suppression accounted for between 40 and 46% of the variance in the depression and anxiety outcomes and 15% of the variance in the physical domain of quality of life. Unwanted thoughts, the subcomponent of thought suppression, was strongly associated with symptoms of depression and anxiety, and with physical and psychological quality of life. ConclusionThought suppression and psychological inflexibility played a significant role in explaining family caregivers’ symptoms of depression and anxiety. In addition, psychological inflexibility was significantly related to quality of life. This suggests the need for acceptance-based strategies to handle thought suppression and psychological inflexibility.

Predictive model of psychological distress in family caregivers of patients with cancer: a cross-sectional study.

To examine a predictive theoretical model of psychological distress based on the following variables reflected on family caregivers of patients with cancer: the unmet supportive care needs, subjective caregiving burden, social support, and the positive aspects of caregiving. A cross-sectional descriptive study was conducted on a sample of 484 dyads of patients and their family caregivers. The caregivers completed structured questionnaires designed to measure psychological distress, unmet supportive care needs, subjective caregiving burden, positive aspects of caregiving, and social support. Patients' demographic variables and medical data were collected from a medical record review. We used a structural equation modeling to test the predictive theoretical model. Path analysis results partially supported the proposed model with satisfactory fit indices. Specifically, family caregivers with an increasing number of unmet needs or a heavier caregiving burden were more likely to have more severe psychological distress. Bootstrapping results supported that the caregiving burden and social support were significant mediators. Greater unmet supportive care needs predicted higher psychological distress through increasing caregiving burden. Stronger social support predicted lower psychological distress through decreasing caregiving burden. Positive aspects of caregiving predicted lower caregiving burden through the increasing perceived social support, which in turn eliminated psychological distress. Unmet supportive care needs could cause psychological distress through increasing caregiving burden. The positive aspects of caregiving reduced caregiving burden through increasing social support, which subsequently alleviated psychological distress. Interventions that aim to satisfy supportive care needs, to reduce caregiving burden, and to strengthen social support ties may boost the mental health of family caregivers.

The Relationship Between Caregiver Reactions and Psychological Distress in Family Caregivers of Patients With Heart Failure.

Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored. The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure. In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem. Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011). The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.

Validity of distress thermometer for screening of anxiety and depression in family caregivers of Chinese breast cancer patients receiving postoperative chemotherapy

ObjectiveFamily caregivers (FCs) of breast cancer patients play a vital role throughout the treatment process. Psychological distress of FCs is common and often ignored. A simple and effective instrument for screening psychological distress would help in selecting those FCs requiring special attention and intervention. Here, the validity of distress thermometer (DT) in FCs of Chinese breast cancer patients receiving postoperative chemotherapy was assessed, and the prevalence of anxiety and depression was evaluated.MethodsWe recruited 200 FCs of hospitalized breast cancer patients in this cross-sectional descriptive study. Before the first cycle of adjuvant chemotherapy, the levels of anxiety and depression among FCs were assessed using DT and Hospital Anxiety and Depression Scale (HADS). In total, 191 valid cases were analyzed. HADS was used as the diagnostic standard to assess the effectiveness of DT as a screening tool for anxiety and depression as well as to analyze the diagnostic efficiency of DT at various cutoff points.ResultsThe definitive prevalence of both anxiety and depression was 8.90%. The mean level of anxiety and depression among FCs was 5.64±3.69 and 5.09±3.85, respectively, both of which were significantly higher than corresponding Chinese norms (P<0.01). The areas under receiver operating characteristic curves of DT for the diagnoses of FCs’ anxiety and depression were 0.904 and 0.885, respectively. A cutoff value of 5 produced the best diagnostic effects of DT for anxiety and depression.ConclusionsThe levels of both anxiety and depression were higher in the FCs of Chinese breast cancer patients receiving postoperative chemotherapy than the national norm. DT might be an effective tool to initially screen psychological distress among FCs. This process could be integrated into the palliative care of breast cancer patients and warrant further research.

The experience of psychological distress in family caregivers of people with dementia: A cross-sectional study.

To evaluate the degree of psychological distress in family caregivers of people with dementia. A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive-compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Alleviating the caregivers' distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver.

Communications with health professionals and psychological distress in family caregivers to cancer patients: A model based on stress-coping theory

BackgroundIn cancer care settings, family caregivers often experience negative or little communication with the health professionals, and this negative communication and limited health-related information causes psychological distress in family caregivers to cancer patients. AimThe first aim of this research is to investigate the relationship between communication with health professionals and psychological distress in family caregivers. The second aim is to investigate the mediating effects of self-efficacy in this hypothetical model. MethodsA total of 1397 family caregivers were included in this research. A structural equation model was then applied, in order to examine the hypothesized model based on the stress-coping model. FindingsMore negative communication with health professionals was associated with higher psychological distress. Self-efficacy in health information seeking significantly mediated the relationship between communication with health professionals and psychological distress. ConclusionThis study indicates that as a coping resource, self-efficacy in health information seeking, plays a significant role in reducing the effects of negative communication with health professionals on psychological distress in family caregivers.

Resilience moderates the association between stigma and psychological distress among family caregivers of patients with schizophrenia

The aims of this study were to describe the prevalence of psychological distress, to further validate the influence of caregivers' stigma and resilience on their psychological distress, and to explore the moderating effect of resilience in the relationship between stigma and psychological distress in caregivers. Participants were 125 family caregivers of individuals with schizophrenia from one provincial Mental Health Center in China. The Kessler Psychological Distress Scale (K10), Perceived Devaluation and Discrimination Scale (PDD) and the Ten-item Connor-Davidson Resilience Scale (CD-RISC10) were used to measure their psychological distress, stigma, and resilience, respectively. A total of 33.6% of caregivers had high levels of psychological distress. Lower levels of resilience and higher levels of stigma among caregivers contributed to greater psychological distress. Furthermore, the moderating effect of resilience in the relationship between stigma and psychological distress in family caregivers of patients with schizophrenia was firstly verified. This study also highlighted that intervention to promote resilience, especially in caregivers who had higher levels of stigma, might be helpful to alleviate their psychological distress.

The effects of a multi-component dyadic intervention on the psychological distress of family caregivers providing care to people with dementia: a randomized controlled trial

Earlier research showed that multi-component dyadic interventions - including a combination of intervention strategies and addressing both the person with dementia and caregiver - have a beneficial impact on the mental and physical health of people with dementia and their family caregivers. A randomized controlled trial (RCT) of a multi-component dyadic intervention, which is a translated and adapted version of an intervention that has been shown to be effective in the US by Teri et al. (2003), was performed. The effects on caregivers' mood (primary outcome), burden, general health, and salivary cortisol levels (secondary outcomes) were studied. Community-dwelling people with dementia and their family caregivers (N = 111 dyads) were randomly assigned. The experimental group received eight home visits during three months, combining physical exercise and support (psycho-education, communication skills training, and planning of pleasant activities). Both the physical exercise and support component were directed at both the person with dementia and the caregiver. The comparison group received monthly information bulletins and phone calls. There were three measurements at baseline (prior to the intervention), at three months, and at six months into the intervention. Data were analyzed with Generalized Estimating Equations (GEE) based on an intention-to-treat analysis of all available data. All analyses showed no benefits of the intervention over time on any of the outcomes. The negative results might be explained by the translation and adaptation of the intervention that has been shown to be effective in the US: the intervention was shortened and did not include cognitive reframing. However, only the health effects on people with dementia and not on caregivers were studied in the US. Several other factors might also have played a role, which are important for future studies to take into account. These are: the usual health care in the country or region of implementation; the wishes and needs of participants for specific intervention components; the room for improvement regarding these components; the inclusion of positive outcome measures, such as pleasure, and the quality of the relationship.

Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial.

BackgroundPalliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.PurposeWe evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ).MethodA randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia.ResultsRecruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group.ConclusionsThese results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry. © 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

The GHQ-12 for the Assessment of Psychological Distress of Family Caregivers

This study examined the utility of the 12-item General Health Questionnaire (GHQ-12) to assess the psychological distress of family caregivers. To accomplish this goal, a sample of 172 caregivers, 25 men and 147 women, aged 56.6 (SD = 13.7) completed self-report questionnaires and provided data on demographic factors. Univariate and bivariate models adjust adequately, although the two-factor model (anxiety/depression and social dysfunction) presented a better fit. Relative caregivers scored higher in psychological distress (anxiety and depression levels) on the GHQ-12 than did the normal population. In conclusion, the GHQ-12 is a sensitive instrument to detect the presence of anxiety and depression in relative caregivers, and the external validity of the instrument is generally adequate. The GHQ-12 seems particularly appropriate for research and clinical and health intervention in caregivers. Implications and limitations of these results are discussed, along with suggestions for future research.

PC-FACS

PC-FACS

A study of the psychological distress in family caregivers of patients with prolonged disorders of consciousness during in-hospital rehabilitation

Objectives: To study psychological distress in a sample of caregivers of patients affected by prolonged disorders of consciousness during hospital stay in the Neurorehabilitation Unit. Materials and methods: Twenty-four caregivers of 22 patients affected by prolonged disorders of consciousness admitted to postacute rehabilitation center, completed self-reported questionnaires for assessment of depressive symptoms, state and trait anxiety, psychophysiological disturbances, prolonged grief disorder, psychological coping strategies, quality of perceived needs, perceived social support, and caregiver burden; at admission, and after four and eight months. Results: At admission depressive symptoms were found in 20/24 caregivers, high levels of anxiety in 16, and relevant psychophysiological disturbances in 10 participants; eight caregivers (32%) met criteria for prolonged grief disorder. The scores on questionnaires did not differ as a function of relatives’ diagnosis (vegetative state vs. minimally conscious state). The longitudinal study (n = 18) showed a progressive and statistically significant increase of “emotional burden” during the hospital stay, whereas the remaining variables did not change significantly. Conclusions: Data confirmed the presence of severe psychological problems in caregivers of patients with prolonged disorders of consciousness. The levels of psychological distress tend to be constant over time, while the emotional burden increases.

Reducing the psychological distress of family caregivers of home‐based palliative care patients: short‐term effects from a randomised controlled trial

Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence-based psychological support initiatives are lacking. The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention. We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress (primary outcome), fewer unmet needs and increased levels of perceived preparedness, competence and positive emotions. A three-arm randomised controlled trial was conducted comparing two versions of the intervention (one face-to-face visit versus two visits) plus standard care to a control group (standard care) across four sites in Australia. A total of 298 participants were recruited; 148 were in the Control condition, 57 in Intervention 1 (one visit) and 93 in Intervention 2 (two visits). Relative to participants in the control group; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly. No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified. However, the intervention demonstrated significant improvements in participants' levels of preparedness and competence for Intervention 2. This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative. Further investigation is required to determine the longer term outcomes of such interventions.