Distress In Family Members Research Articles

The moderating impact of interacting with distressed families of decedents on trauma exposure in medical examiner personnel.

Prior research has examined the incidence of posttraumatic stress stemming from either direct or indirect trauma exposure in employees of high-risk occupations. However, few studies have examined the contribution of both direct and indirect trauma exposure in high-risk groups. One particularly salient indirect trauma often endorsed as the most stressful by many occupational groups is interacting with distressed family members of victims of crime, illness, or accidents. The present study examined the extent to which interacting with distressed families moderated the impact of cumulative potentially traumatic event (PTE) exposure on depression and posttraumatic stress disorder (PTSD) symptoms in 245 employees of medical examiner (ME) offices. Employees from 9 ME office sites in the United States participated in an online survey investigating the frequency of work place PTE exposures (direct and indirect) and mental health outcomes. Results revealed that cumulative PTE exposure was associated with higher PTSD symptoms (PTSS) for employees who had higher frequency of exposure to distressed family members. After controlling for cumulative and direct PTE exposure, gender, and office site, exposure to distressed families was significantly associated with depressive symptoms, but not PTSS. Findings of our research underscore the need for training employees in high-risk occupations to manage their reactions to exposure to distraught family members. Employee training may buffer risk for developing PTSD and depression. (PsycINFO Database Record

Symptoms of Cardiac Anxiety in Family Members of Intensive Care Unit Patients.

Studies have shown an association between intensive care unit environments and symptoms of psychological distress in family members of critically ill patients. To investigate levels of cardiac anxiety in family members of intensive care unit patients. From March 2012 to July 2013, on the third day after the patient's admission, 223 family members of 147 patients completed the Cardiac Anxiety Questionnaire. A total score was calculated from 3 subscales: fear and worry about heart sensations, avoidance of activities reproducing cardiac symptoms, and heart-focused attention and monitoring of cardiac activity. Among the family members, 142 were women (63.7%) and 81 (36.3%) were men, 150 (67.3%) were married, and 37 (16.6%) were unemployed. Their mean score for overall cardiac anxiety was 1.11 (SD, 0.64), significantly higher (P < .001) than for the general Greek population. Although all 3 subscales scores were significantly higher than for the general population, the highest score was recorded for the avoidance subscale (mean, 1.77; SD, 0.68). The relationship to the patient had a significant effect on heart-focused attention (F5 = 3.51; P = .03). The mean score for patients' siblings (2.0; SD, 0.01) differed significantly (P = .02) from the mean for other family member groups. Older adults (P = .02) and married participants (P = .05) reported higher levels of fear and worry related to cardiac stimuli, and women further reported higher levels of cardioprotective avoidance behavior (P = .02). A noticeable number of family members of critical care patients had moderate to severe cardiac anxiety during the hospitalization of their relatives.

Family Centered Practice During Pediatric Death in an Out of Hospital Setting

Objective: To understand effective ways for EMS providers to interact with distressed family members during a field intervention involving a recent or impending out-of-hospital (OOH) pediatric death. Methods: Eight focus groups with 98 EMS providers were conducted in urban and rural settings between November 2013 and March 2014. Sixty-eight providers also completed a short questionnaire about a specific event including demographics. Seventy-eight percent of providers were males, 13% were either African American or Hispanic, and the average number of years in EMS was 16 years. They were asked how team members managed the family during the response to a dying child, what was most helpful for families whose child suddenly and unexpectedly was dead in the OOH setting, and what follow up efforts with the family were effective. Results: The professional response by the EMS team was critical to family coping and getting necessary support. There were several critical competencies identified to help the family cope including: (1) that EMS provide excellent and expeditious care with seamless coordination, (2) allowing family to witness the resuscitation including the attempts to save the child's life, and (3) providing ongoing communication. Whether the child is removed from the scene or not, keeping the family appraised of what is happening and why is critical. Exclusion of families from the process in cases of suspected child abuse is not warranted. Giving tangible forms of support by calling friends, family, and clergy, along with allowing the family time with the child after death, giving emotional support, and follow-up gestures all help families cope. Conclusion: The study revealed effective ways for EMS providers to interact with distressed family members during an OOH pediatric death

Delirium related distress in family: A non-systematic review

IntroductionDelirium is a common neuropsychiatric syndrome, particularly in elderly hospitalized patients, and is associated with an increase in morbidity and mortality. Although these negative consequences are well documented, only a few studies describe the experience of delirium from the families’ perspective.AimsTo analyze studies regarding the experience and distress caused by delirium in the families/caregivers of adult/elderly hospitalized patients.MethodsA non-systematic review of published articles until October 2015 in the database PubMed was carried out. The keyword “Delirium” was combined with: “experience”, “distress”, “anxiety” and “family”, “carer” and “relatives”. Inclusion criteria were: standardized diagnosis of delirium, systematic/prospective assessment of distress level. Clinical cases were excluded.ResultsSixteen studies met the inclusion criteria for analysis. In most of them, family members (mostly younger) showed high levels of distress, even higher than health care professionals and patients. Several predictors of family distress were found, including poor functional status, psychomotor agitation, delusions, emotional lability, incoherent speech, inattention and disorientation. Higher distress was associated with long-term consequences (e.g. generalized anxiety). In the qualitative research, family members interpreted delirium as a sign of approaching death, result of pain/discomfort or an effect of medication. In addition, distress was associated with rapid and unexpected changes or unable to recognize the loved ones.ConclusionsDelirium in patients was associated with significant distress in family members. These findings underline the importance of providing information and the development of appropriate supportive and psychoeducational interventions in order to help families throughout this process and reduce the associated distress. This work is supported by FCT (SFRH/BPD/103306/2014).Disclosure of interestThe authors have not supplied their declaration of competing interest.

Food connections: A qualitative exploratory study of weight- and eating-related distress in families affected by advanced cancer

PurposeWeight loss and eating problems are common in cancer and have a profound effect on quality of life. They are symptoms of cancer cachexia syndrome.This paper examines interdependency between advanced cancer patient and family carer experience of weight- and eating-related problems, leading to proposition of how weight- and eating-related distress might be alleviated in both patients and their family members. MethodsThe study was of cross-sectional design. Interpretive phenomenology informed the analytic process. Patient participants had advanced cancer and concern about weight and/or eating. Semi-structured interviews were conducted with 31 patient-spouse/partner dyads (62 interviews), which focused on weight loss and eating problems in the patient and how these had been managed. ResultsThis study found change in weight and eating habits in advanced cancer to disrupt food connections. Food connects us with others physically by fuelling the body and sustaining physical activity and life, emotionally by communicating feelings about self and others, and socially by providing a reason for sharing time with others. The study found three dyadic responses to disruption in food connections; dual acceptance, dual resistance and mismatched resistance. They are of interest, because they can help discriminate between those patient-family carer dyads who might benefit from psychosocial interventions and those who will cope without such help. ConclusionThe findings challenge clinicians and researchers to seek ways of aiding not only with concerns of the individual patients and carers, but also with interactions between distressed family members affected by symptoms of cancer cachexia syndrome.

Care and caring in the intensive care unit: Family members' distress and perceptions about staff skills, communication, and emotional support

PurposeFamily members of intensive care unit (ICU) patients are sometimes highly distressed and report lower satisfaction with communication and emotional support from staff. Within a study of emotional responses to traumatic stress, associations between family distress and satisfaction with aspects of ICU care were investigated. Materials and methodsIn 29 family members of trauma patients who stayed in an ICU, we assessed symptoms of depression and posttraumatic stress disorder (PTSD) during ICU care. Later, family members rated staff communication, support, and skills and their overall satisfaction with ICU care. ResultsRatings of staff competence and skills were significantly higher than ratings of frequency of communication, information needs being met, and support. Frequency of communication and information needs being met were strongly related to ratings of support (rs = .75-.77) and staff skills (rs = .77-.85), and aspects of satisfaction and communication showed negative relationships with symptoms of depression (rs = −.31 to −.55) and PTSD (rs = −.17 to −.43). ConclusionsAlthough satisfaction was fairly high, family member distress was negatively associated with several satisfaction variables. Increased understanding of the effects of traumatic stress on family members may help staff improve communication and increase satisfaction of highly distressed family members.

Brief Consultation to Families of Treatment Refusers with Symptoms of Obsessive Compulsive Disorder: Does It Impact Family Accommodation and Quality of Life?

Family members are often directly and significantly impacted by the restrictive demands of OCD, a frequently disabling disorder. Family accommodation behaviors (i.e., doing things for or because of the OCD sufferer that a person would not normally do) are associated with dysfunction, including poorer treatment responses in OCD sufferers and greater distress in family members. Although evidence suggests family-based intervention can reduce symptoms in OCD sufferers who participate in treatment, there is a lack of research documenting the impact of interventions designed for the families of OCD treatment refusers (TR). Brief Family Consultation (BFC) was developed by our clinical team to help families refocus their efforts on the things that they can realistically control and change (e.g., participation in compulsions). In this crossover study, twenty families related to an individual who exhibited OCD symptoms but had refused treatment were assigned to five phone sessions of either BFC or a psychoeducation condition. Compared to this credible, attention-placebo control group (Brief Educational Support; BES), BFC (but not BES) resulted in reductions in family accommodation behavior, yet neither BFC nor BES resulted in improved quality of life for family members of treatment refusers. BFC is one of the first interventions to be evaluated for its ability to help families when their loved ones with obsessive compulsive symptoms refuse treatment. This pilot study provides new insights for clinicians and researchers to better address the needs of these neglected families.

Suicidal Ideation and Distress in Family Members Bereaved by Suicide in Portugal

The present study assessed the impact of suicide and distress on suicidal ideation in a sample of 93 Portuguese family members bereaved by suicide. A control community sample of 102 adults also participated. After controlling for educational level, those bereaved by the suicide of a family member were found to have higher levels of suicidal ideation. Forty-two percent of family members had Suicide Ideation Questionnaire scores at or above the cutoff point. General distress, depression, anxiety, and hostility related to suicidal ideation, whereas time since suicide also interacted with general distress and depression in predicting suicidal ideation.

Prevalence and Predictors of Personality Change After Severe Brain Injury

ObjectivesTo investigate the prevalence of personality change after severe brain injury; to identify predictors of personality change; and to investigate whether personality change is associated with distress in family members. DesignA longitudinal study of personality change. SettingRehabilitation unit. ParticipantsThe study sample was composed of 22 pairs of patients with traumatic brain injury or nontraumatic brain injury (N=22) and their significant others (SOs). InterventionsNot applicable. Main Outcome MeasuresAn SO completed the observer version of the NEO Five Factor Inventory rating the patient at discharge from hospital and 1 year after injury. The SOs were also asked to complete the anxiety and depression scales of the Symptom Checklist-90-Revised, rating their own emotional condition and health-related quality of life (HRQOL) as assessed by the 4 mental scales of the Medical Outcomes Study 36-Item Short-Form Health Survey. ResultsOf the sample, 59.1% experienced personality change after acquired brain injury, and the most dominant changes were observed in the personality traits of neuroticism, extraversion, and conscientiousness. Changes in neuroticism were most often observed in patients with frontal or temporal lesions. Generally, personality changes in patients were not associated with more distress and lower HRQOL in family members; however, change in patient agreeableness was associated with lower HRQOL on the role limitations-emotional scale. ConclusionsPersonality change was observed in most patients with severe brain injury. Change in neuroticism was associated with frontal and temporal lesions. Generally, personality change was not associated with more distress and lower HRQOL in SOs.

Management of death rattle at end of life

Noisy breathing or death rattle is a common clinical sign in the final days of life. When it occurs, the level of consciousness is usually low and it is generally assumed that patients are not distressed by it. Despite the assumption that patients are not distressed, death rattle is usually actively treated in palliative care settings through a combination of pharmacological and non-pharmacological measures. Anti-cholinergic or anti-muscarinic medications are the drugs of choice in practice, even in the absence of patient distress, despite there being no conclusive evidence to suggest that any drug is superior to placebo. In addition, a recent Cochrane review suggested that there is a lack of supporting evidence for the use of anti-cholinergics to treat death rattle (Wee and Hillier, 2010). The choice of drug is based on the various properties of the drug and the desired effects. However, treatment is focused on alleviating the perceived distress of family members rather than aimed specifically at benefiting the patient. Moreover, anti-cholinergic drugs can result in unpleasant side-effects such as urinary retention and dry mouth for patients who are probably unable to report symptoms. Recent research calls for prescribers to consider carefully why they are treating death rattle. Moreover, families need to be reassured and have it explained to them that it is unlikely that the patient is distressed and why this is the case.

Clinical Pearls

Guidelines for appropriate patient assessments after procedures are often not evidence based. The standard after removal of temporary pacer wires is to monitor “routine” vital signs (VS) at set intervals. To determine if current procedures for obtaining VS after temporary pacemaker wire removal (TPWR) effectively identify risks for cardiac tamponade (CT), Mahon and colleagues reviewed 23 717 cardiothoracic surgery cases with 23 reoperations for CT following TPWR. Blood pressure changes were the most common single symptom after TPWR and before reoperation for CT. Other findings were bleeding in 6 cases (26%), dyspnea in 26% of reviewed patients, and infrequent heart rate changes. Based on these findings, the authors suggest the following:—Elisabeth George,rn, phdSee Article, pp 432–440In a retrospective study, Nye and colleagues compared scores of the Glasgow Coma Scale (GCS) and 3 published “slim” versions of the National Institutes of Health Stroke Scale (NIHSS) with the full NIHSS to evaluate the value of these measures in detecting neurologic disability. Study findings revealed the following:These findings uphold the American Stroke Association and Brain Attack Coalition Guidelines for use of the NIHSS to quantify neurologic disability in acute stroke patients.— Karen A. McQuillan,rn, ms, cns-bc, ccrn, cnrnSee Article, pp 442–448McAdam and colleagues studied the levels of psychological distress in family members of high-risk intensive care unit (ICU) patients and found that psychological symptoms decreased 3 months after the ICU stay but remained high enough to warrant concern. Nurses may be able to recognize symptoms of stress in family members by observing the following:Preventive measures to respond to family needs may include these techniques:—Janet Mulroy,rn, msn, acnp, ccns, ccrnSee Article, pp 386–394

Psychotherapy for Depression Among Patients with Advanced Cancer

Cancer causes profound suffering for patients, and previous reports have demonstrated that psychological distress, particularly depression, is frequently observed in advanced and/or terminally ill cancer patients. Such depression can lead to serious and far-reaching negative consequences in patients with advanced cancer: reducing their quality of life and causing severe suffering, a desire for early death, and suicide, as well as psychological distress in family members. For the management of their distress, cancer patients are more likely to prefer psychotherapeutic interventions to pharmacotherapy, and psychotherapy is known to be effective for the management of depression among advanced cancer patients. Hence, psychotherapy is an important treatment strategy for alleviating their depression. Furthermore, patients with advanced and/or terminal cancer suffer from various physical symptoms and are forced to face a continuous decline in physical function. In addition, psychological defense mechanisms such as denial are frequently observed in these patients. Hence, an individually tailored and careful psychotherapeutic approach should be followed, which considers the specific nature of the advanced and/or terminal cancer. This review focuses on psychological interventions that can be utilized in the clinical oncology practice to ameliorate depression among advanced and/or terminally ill cancer patients, rather than focusing on the level of evidence for each intervention. In addition, the current review introduces some novel therapeutic strategies that have not yet been proved to be effective but show promise for future studies.

Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents

Family functioning appears to be a predictor of psychological distress among childhood cancer survivors and their family members; however, relatively little is known about patterns in those families that are psychologically at-risk. The purpose of this study was to identify distinct clusters of families that include childhood cancer survivors, and to evaluate differences between the clusters with respect to anxiety, depression, and post-traumatic stress symptoms (PTSS). Childhood cancer survivors and their parents (247 individuals: 88 adolescent cancer survivors, 87 mothers, and 72 fathers) completed self-report questionnaires. Perceptions of family functioning were assessed using the Family Relationship Index and its three dimensions (cohesiveness, expressiveness, and conflict), and individuals were classified into groups via a cluster analytic approach. State-trait anxiety, depression, and PTSS were assessed to all of the participants. The individuals were classified into three types: One cluster featured high cohesiveness, high expressiveness, and low conflict ('Supportive-type', n=102); a second cluster featured low cohesiveness, low expressiveness, and high conflict ('Conflictive-type', n=32); and a third cluster had moderate cohesiveness, moderate expressiveness, and moderate conflict ('Intermediate-type', n=113). Among the three types, an analysis of variance revealed that 'Conflictive-type' members had the highest levels of PTSS, depression, and state-trait anxiety. These findings suggest that perceptions of family functioning are related to psychological distress in family members of childhood cancer survivors. A family-focused intervention might be a useful approach to targeting emotional distress in these families, particularly for families with a 'Conflictive-type' family member.

Development and validation of the Family Decision-Making Self-Efficacy Scale

Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one. On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test-retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated. A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test-retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario. The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

Palliative care training and burnout in oncology fellows

9540 Background: Burnout among physicians is associated with fatigue, exhaustion, and depression, and can result in increased medical errors and sub-standard patient care. We sought to determine rates and predictors of burnout in oncology fellows. Methods: As part of a larger study on fellows' attitudes, education, and experiences in palliative care, we administered the 22 item Maslach Burnout Inventory (MBI) to second year U.S. oncology fellows. The 104 item instrument, modified from a survey of medical students, was revised after field testing and a pilot survey. The MBI measures three domains: emotional exhaustion (EE), depersonalization (DP), and personal accomplishment (PA); higher EE and DP scores and lower PA scores indicate burnout. Bivariate and multivariate analyses were used to find associations between burnout and fellow demographics, attitudes, and educational experiences. To accommodate for multiple testing, p&lt;0.01 was considered statistically significant. Results: The response rate was 63.2% (254 of 402 eligible fellows). Gender, race, and location of medical school (U.S. vs. other) did not differ between respondents and non-respondents. Among respondents, 28.1% reported high EE, 30.0% reported high DP, and 26.8% reported low PA. Over half reported burnout in at least one domain (32.9% in one, 16.5% in two, and 5.5% in all three domains). The following associations were found on multivariate analyses. Fellows who identified as white had higher rates of EE (p=0.0006) while EE was lower in those who: 1) rated their program's overall teaching ‘very good‘ or ‘excellent‘ (p=0.005), 2) felt prepared to address spiritual issues around end-of-life care (p=0.002), and 3) felt prepared to manage their own feelings about illness and dying (p=0.008). Fellows who identified as white (p=0.008) or reported dreading encounters with emotionally distressed family members (p=0.0002) had higher DP. The only factor associated with higher PA scores was agreement that doctors have a responsibility to help patients prepare for death (p&lt;0.0001). Conclusions: Over half of oncology fellows experience at least one domain of burnout. Higher quality teaching within their fellowship program and higher levels of self-assessed preparation to care for patients at the end of life are associated with lower levels of burnout. No significant financial relationships to disclose.

Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services.

The role of the bioethicist in family meetings about end of life care

There has been little study of the content of bioethicists’ communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the “consultant” role, in which bioethicists define and support ethical principles such as those enshrined in the “rational choice” model; and the “mediator” role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the “rational choice” decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists’ contributions generally supporting staff views about end of life care. Bioethicists’ called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, “persuader”, to official roles of “consultant” and “mediator”.

Terminal Delirium: Recommendations from Bereaved Families' Experiences

Although delirium is a common complication in terminally ill cancer patients and can cause considerable distress for family members, little is known about effective care strategies for terminal delirium. The primary aims of this study were 1) to clarify the distress levels of bereaved families and their perceived necessity of care; and 2) to explore the association between these levels and family-reported professional care practice, family-reported patient behavior, and their interpretation of the causes of delirium. A multicenter questionnaire survey was conducted on 560 bereaved family members of cancer patients who developed delirium during their final two weeks in eight certified palliative care units across Japan. We obtained 402 effective responses (response rate, 72%) and, as 160 families denied delirium episodes, 242 responses were analyzed. The bereaved family members reported that they were very distressed (32%) and distressed (22%) about the experience of terminal delirium. On the other hand, 5.8% reported that considerable or much improvement was necessary, and 31% reported some improvement was necessary in the professional care they had received. More than half of the respondents had ambivalent wishes, guilt and self-blame, and worries about staying with the patient. One-fourth to one-third reported that they felt a burden concerning proxy judgments, burden to others, acceptance, and helplessness. High-level emotional distress and family-perceived necessity of improvement were associated with a younger family age; male gender; their experience of agitation and incoherent speech; their interpretation of the causes of delirium as pain/physical discomfort, medication effects, or mental weakness/death anxiety; and their perception that medical staff were not present with the family, not respecting the patient's subjective world, not explaining the expected course with daily changes, and not relieving family care burden. In terminal delirium, a considerable number of families experienced high levels of emotional distress and felt some need for improvement of the specialized palliative care service. Control of agitation symptoms with careful consideration of ambivalent family wishes, providing information about the pathology of delirium, being present with the family, respecting the patient's subjective world, explaining the expected course with daily changes, and relieving family care burden can be useful care strategies.

Preface

Preface

What is the risk of distress in palliative care survey research?

To determine whether caregivers believe that interviews about end-of-life care are distressing and to identify patient and respondent characteristics associated with an increased risk of distress, distress was assessed in four studies that used family interviews. The setting was four Medicare certified hospice organizations, the University of Pennsylvania Memory Disorders Clinic, and two nursing homes, and participants included 296 family members of seriously ill or recently deceased patients. For three of the studies, respondents described their distress on a 5-point scale. Distress was reported as either present or absent in the fourth study. Sixty-four respondents (22%) reported experiencing distress. Intensity of distress was higher for younger respondents (Spearman rho −0.16; P=0.013), younger patients (Spearman rho −0.28; P < 0.001), and family members of patients with cancer (mean 0.55 vs. 0.24; Rank sum test P < 0.001). In a multivariable model, after adjusting for study population, younger patient age and cancer diagnosis were independently associated with the severity of distress. Sensitive questions about death and dying are unlikely to cause distress for family members. Although the likelihood of distress is low overall, investigators recruiting from these populations may improve the research by incorporating methods to assess and manage distress.