Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.
BACKGROUND: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.
METHODS: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.
RESULTS: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.
CONCLUSIONS: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
Parentally bereaved children and adolescents are at risk of developing psychological health problems. Evidence for a correlation between communication and broad measures of psychological health exists in other populations. The aim of this study was to examine associations between family communication and specific aspects of psychological health for children and adolescents following a parent’s death from cancer using parent-proxy and adolescent self-reports. Parent-proxy reports for children and adolescents, and adolescent self-reports for Parent–Adolescent Communication, Strengths and Difficulties Questionnaire, and Prolonged Grief-13 child were analyzed using descriptive statistics and Spearman’s correlation. Parents rated communication as moderate in quality and reported good psychological health for children and adolescents. Adolescent self-reports indicated low-quality communication with their parent and poor psychological health. Significant associations between Parent–Adolescent Communication subscales and Strengths and Difficulties Questionnaire subscales were found for each group. Prolonged grief was associated with emotional problems but not communication for all three groups.
This study examined gender differences in mental health of bereaved parents related to the gender of deceased only child in China, an only-child society with traditional culture of son preference, using data drawn from the China Family Planning Survey on Vulnerable Households in 2017. The findings indicated that parents with deceased only child suffered from more negative mental health symptoms than nonbereaved parents. For only-child-death families, there were no statistically significant gender differences in mental health of parents, and the gender of the deceased only child was basically unrelated to maternal/paternal mental health. Due to the implementation of one-child policy in China, both sons and daughters are highly prized and equally relied on by aging parents owing to the irreplaceability of the only child, which might moderate the effects of traditional culture of son preference on bereaved parental mental health.
The death of one’s only child in post-reproductive age (in Chinese, shidu) is a traumatic event that has specific cultural implications in China. This study investigates the experience of a changed life and emerging challenges amongst Chinese shidu parents. Thematic analysis of 36 interviews revealed four main life consequences following shidu: impairment of psychological and physical health, weakening of social networks and interactions, loss of meaning in life, and lack of care and security. We suggest that health monitoring and mental health intervention, adequate social and community support, and improved social security are the critical needs in this vulnerable group.
OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender, and to assess potential interactive effects of time since loss and gender on bereavement outcomes.
METHODS: This study examined symptom levels of Prolonged Grief Disorder, depression, posttraumatic stress and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1-5 years previously, subdivided to five subsamples, one for each year since loss. ANOVA was used to assess differences in symptom levels, related to years since loss and gender.
RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms and insomnia, were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels.
CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to five years after the death of their child. Findings highlight that bereaved parents may need long-term support and the results deserve further attention in research and clinical care.
OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another.
METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months.
RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66).
CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.
Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight so desperate that it can only be relieved by the end of the patient's existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient's mind, and the danger of diminishing the worth of one's life out of shame or self-denigration. R. D. Laing's terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient's view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver's view of the patient's stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.
Cet article fait état d’une étude préparatoire portant sur le suivi psychologique de patients hospitalisés en secteur protégé d’hématologie. La littérature anglo-saxonne, dont les auteures ont publié une recension, montre que le secteur protégé est délétère pour la santé psychologique des patients et qu’il est nécessaire de penser aux modalités de prise en charge psychologique. Il existe peu d’études en France sur ce sujet. Le présent travail rend compte, sous forme de trois études de cas, d’une phase exploratoire au cours de laquelle les patients ont été inclus dans un dispositif basé sur l’aire transitionnelle et le soutien à la narrativité. Les résultats de cette étude montrent que : 1/les modalités de régression dont dispose le sujet, elles-mêmes liées à sa tolérance à supporter la passivité sont déterminantes pour affronter la maladie et l’isolement ; 2/cette expérience extrême fait caisse de résonance, réactivant chez les patients des pans douloureux de leur histoire.
OBJECTIVES: Incident depression, occurring after an acute coronary syndrome (ACS) in never depressed patients, exerts a negative effect on the cardiac prognosis. Nonetheless only a few studies have evaluated the risk factor for incident depression and, particularly, no study have investigated the role of personality disorders. Therefore, the aim of this study is to verify if personality disorders represent a risk for incident depression in patients at their first ACS.
METHOD: The study sample was selected among never depressed patients who were consecutively admitted to the Coronary Intensive Care Unit, from January 2009 to March 2012, for the first ACS. The study sample included 262 patients. The presence of depressive disorder was assessed with the Primary Care Evaluation of Mental Disorders (DSM-IV criteria), whereas its severity was evaluated with the Hospital Anxiety and Depression Scale. Evaluations were collected at baseline and at 1, 2, 4, 6, 9, 12 and 24 months of follow-up. Moreover, at baseline personality disorders were investigated with the Structured Clinical Interview for DSM-IV Axis II disorders.
RESULTS: Out of 262 subjects, a depressive disorder was diagnosed in 56 patients (21%). At baseline risk factors for incident depression were being widowed, having a distress reaction and narcissistic personality traits.
CONCLUSION: Clinicians should keep in mind these characteristics when facing patients at their first ACS, given the detrimental effect of depression on cardiac prognosis. A psychological support should prevent the onset of incident depression in these patients.
This paper reports on experiences of dealing with practical matters after death. Semi structured interviews with bereaved individuals were thematically analyzed. Within the theme of coping, dealing with practical matters was a significant stressor and was found to be extremely challenging, time consuming, and to negatively impact on mental and emotional well-being. This study adds new insights on the challenges experienced by the bereaved when attending to practical matters and may help to inform the design of bereavement support, inform standard operating procedures of businesses, and government bereavement leave legislation.
Death of a relative or friend is a potentially disruptive event in the lives of adolescents. To provide targeted help, it is crucial to understand their grief and mental health experiences. Thematic analysis of 39 semistructured telephone interviews yielded two themes: Grieving apart together and Personal growth. High self-reliance and selective sharing were common. Feelings of guilt and "why" questions seemed more pronounced among the suicide bereaved. There was strong evidence of personal growth, increased maturity, and capacity to deal with personal mental health/suicidality. Despite its devastating effects, experiencing a death can be a catalyst for positive mental health.
BACKGROUND: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process.
PATIENTS AND METHODS: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants' readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis.
RESULTS: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653-1.428] and 1.107 [95% CI, 0.690-1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, -0.583; 95% CI, -0.977 to -0.189; P= .004) and depressive symptoms (ß, -0.533; 95% CI, -1.036 to -0.030; P= .038) compared with those in the control arm, but QoL did not differ.
CONCLUSIONS: Our ACP intervention facilitated participants' psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients' wishes in deeply Confucian doctrine-influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value-concordant EoL cancer care.
Introduction: Fibrotic interstitial lung disease (f-ILD) comprises a group of diseases with lung scarring and reduced life expectancy. The short time from diagnosis to death affects the patients’ bereaved spouses, who risk developing prolonged grief. In Denmark palliative care is most often offered to cancer patients.
Aim: We aimed to investigate the experience of spouses of f-ILD patients during the final stages of illness and up to the first year after the patient's death to investigate if palliative care could ease the transition and prevent PGD.
Methods: Our study had a qualitative design triangulating in-depth interviews, field notes, participant diaries and the prolonged grief questionnaire PG-13. We included 20 spouses and applied thematic analysis. Initial coding was performed deductively according to the chronological stages of before, during and after the death of the patient. We subsequently coded inductively within the stages.
Results: During the final days the spouses experienced emotional ambivalence shifting between hope, acceptance and despair. Factors affecting the spouses during the final hours were the timing, location, and process of death. After the patient's death the spouses experienced feelings of grief and optimism as they moved toward a new life on their own.
Conclusions: Some of the factors affecting the spouses and potentially causing prolonged grief might be alleviated by offering palliative/supportive care and advance care planning to f-ILD patients and their family.
OBJECTIVE: The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer.
METHOD: A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses.
RESULTS: Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden.
SIGNIFICANCE OF RESULTS: Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.
I examine: whether specific emotion-focused coping and help-seeking strategies adopted by older widow(er)s 6 months postloss affect depressive, anger, and yearning symptoms 1 year later; whether these effects are accounted for by psychosocial factors which guide the selection of coping strategies; and the extent to which patterns differ by gender. I estimate nested multivariate OLS regression models using data from the Changing Lives of Older Couples, a prospective multiwave survey of spousal bereavement (N = 164). Widows are more likely to use positive reframing, active distraction, help-seeking, and turning to God for strength, whereas widowers tend to use avoidant strategies, and are more likely to seek connection with their late spouse. Avoidant strategies like trying to forget and dulling the pain with alcohol increase depressive and anger symptoms; substance use is particularly consequential for men’s anger symptoms. Positive reframing increases depressive symptoms yet mitigates against anger. Seeking comfort from God also protects against anger. Seeking help from a doctor increases anger and depressive symptoms in baseline models, although effects are accounted for by selection. Maladaptive coping strategies are linked with anger, whereas depression and yearning are relatively immune to coping strategies, reflecting the relatively short-lived time course of these two symptoms. The results carry implications for bereavement theories and mental health interventions targeting older widow(er)s. Older widowers who cope by turning to unhealthy behaviors are especially prone to anger, which has documented physical health effects and may alienate potential sources of social support.
Despite the high rate of infant mortality in Ghana, few studies have explored the maternal experience of infant loss and the perinatal grieving process. As part of a larger study that interviewed 153 mothers with a sick infant, this 1-year follow-up study reinterviewed eight mothers from the original cohort whose infant died since the study began. Mothers were queried about mental health, coping, and cultural issues related to the loss. Mothers were often discouraged from speaking or thinking about the death due to fear of psychological harm and impact on fertility. Primary coping mechanisms involved seeking support within the community and accepting the loss as God’s will. Mothers desired more communication from health-care providers at the time of death. Despite the cultural norm of silent acceptance in the face of perinatal loss, intense maternal grief and desire to mourn may allow more opportunities for health-care workers to support bereaved mothers.