Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement.

OBJECTIVE: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement. METHODS: This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death. RESULTS: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement. CONCLUSIONS: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time.

Cancer Caregivers' Preparedness for Loss and Bereavement Outcomes: Do Preloss Caregiver Attributes Matter?

Past studies examining the relationship between preparedness for loss and bereavement outcomes among caregivers of spouses/partners with life-limiting illness did not adequately account for preloss caregiver attributes that could potentially confound the relationship. Using a sample of spouse/partner cancer caregivers (N = 226), we examined how preloss caregiver attributes were associated with how prepared one felt for loss and their role in the relationship between preparedness and later bereavement outcomes. Nearly half reported they were not emotionally prepared, and 35% were not prepared for the practical challenges associated with the loss. Although attributes such as depression, anxiety, competence in daily activities, and financial adequacy were associated with both preparedness and bereavement outcomes, regression analyses revealed that preparedness remained the strongest predictor in all models. We suggest that early interventions enhancing caregivers' preparedness for loss may hold considerable promise for improved bereavement outcome.

Rules of performance in the nursing home: A grounded theory of nurse-CNA communication.

This study offers an initial theoretical understanding of nurse-CNA communication processes from the perspectives of nurses and CNAs who are providing direct care to residents in nursing homes. A grounded theory approach provided an understanding of nurse-CNA communication process within the complexities of the nursing home setting. Four themes (maintaining information flow, following procedure, fostering collegiality, and showing respect) describe the "rules of performance" that intertwine in nuanced relationships to guide nurse-CNA communication processes. Understanding how these rules of performance guide nurse-CNA communication processes, and how they are positively and negatively influenced, suggests that nurse-CNA communication during direct care of nursing home residents could be improved through policy and education that is specifically designed to be relevant and applicable to direct care providers in the nursing home environment.

Spouse cancer caregivers' burden and distress at entry to home hospice: The role of relationship quality.

High-quality relationships may be protective for family caregivers. This study focuses on relationship quality categories (supportive and ambivalent) in spouse caregivers in cancer home hospice. The goals of this article are to, first, describe relationship quality categories among end-of-life caregivers and, second, test the effects of relationship quality categories on caregiver burden and distress within a stress process model. Using questionnaire data collected at entry to home hospice, we found relationship quality categories were proportionally similar to those seen in noncaregiver older adults. Relationship quality significantly predicted caregiver burden, which completely mediated the relationship between caregiver relationship quality and distress. Caregivers whose social contexts place them at risk for greater distress may benefit from increased clinical attention or intervention.

Missed Opportunity: Hospice Care and the Family.

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

Spousal Bereavement Following Cancer Death.

Loss due to cancer could predispose surviving spouses or partners to a variety of negative outcomes. Although a terminal prognosis may provide opportunities to prepare for the loss, existing evidence is inconclusive as to whether death expectedness buffers potentially negative bereavement outcomes. Using data from the Living After Loss study, we examined longitudinally outcomes of bereaved individuals whose spouses/partners died from cancer (n = 112) versus other causes (n = 213) while accounting for death expectedness. While most of the cancer deaths were expected, more than half of the non-cancer deaths were not. The lowest levels of depression, grief, and loneliness over time were among those whose spouses/partners died expectedly from causes other than cancer. Cancer-bereavement was as equally distressing as any unexpected death. Future efforts should focus on the mechanisms underlying these outcomes and develop effective and early interventions to those in greatest need.

Perceived self-competency among the recently bereaved.

In this study, the authors identified personal resources, features of the marital relationship, and death circumstances that affected perceived self-competency among recently bereaved older adults. Data came from 328 widowed persons who participated in the "Living After Loss" project. Results suggested that those who had more personal resources--namely, income and good health--were the most competent in daily life tasks. Surprisingly, neither death forewarning nor marital quality improved competency after widowhood. Higher competency was associated with more positive mental health outcomes, suggesting that grief is complicated by the need to enhance and/or restore daily life activities as well as the need to deal with the sadness associated with the loss.

A Tale of Two Counties:Bereavement in Socio-Demographically Diverse Places.

The "Living After Loss" study was designed to test the effectiveness of the dual process model (DPM) of coping with bereavement. In order to obtain a larger and more diverse sample we studied 328 recently widowed men and women (61%) age 50+ in two counties, Salt Lake (n=197) and San Francisco (n=131) in two states, Utah and California. This paper does not report on the effects of the intervention but focuses on a comparison of the bereaved spouses/partners in these two cites. First, the only socio-demographic differences we found between those in SF and SL were that those in San Francisco were more racially, ethnically and religiously diverse, higher in education, had slightly fewer years in their relationship to the deceased and were two weeks longer in their grief process. Second, there were far more similarities than differences between SF and SL regarding nearly all of the study variables. Third, we found that those in SF had more positive qualitative features in their friendship support networks and that for bereaved in both counties, we found strong associations with having highly supportive friend-based networks and more positive bereavement adjustments (especially experiencing lower levels of loneliness and depression). Limitations and suggestions for future research are described.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.

Stress-related growth among the recently bereaved.

Although stress-related growth (SRG), or a personal transformation beyond adaptation, can be an outcome for some individuals after a traumatic life experience like spouse or partner loss, it is often assumed that some time needs to pass before this happens. This study reports on early experiences of SRG relatively soon after the loss of a spouse or partner in mid and later life. Self-administered questionnaires were completed by 292 recently bereaved (2-6 months) partners, aged 50+, as part of the Living After Loss study conducted in Salt Lake City and San Francisco. Substantial variability in SRG was observed where 21% scored > or =1 SD above and approximately 18% scored > or =1 SD below the sample mean of 17.2 (SD = 7.0). Regression analyses revealed that SRG was more likely for those who had expected their partners' deaths, who were more religious and who engaged in loss- and restoration-oriented coping processes, and was independent of grief levels. Findings suggest that some individuals drew upon their religious beliefs as a way to find meaning and make sense of what happened as they rebuilt their 'assumptive world'. Also, those who anticipated their partner's death could have had more opportunity to cognitively process the loss, address the challenges of widowed life and learn new skills and discover previously unrecognized strengths.

Dual-Process Bereavement Group Intervention (DPBGI) for Widowed Older Adults.

BACKGROUND AND OBJECTIVES: To examine the primary and secondary outcomes of a theory-driven group bereavement intervention for widowed older adults through a cluster-randomized controlled trial. RESEARCH DESIGNS AND METHODS: Twelve community centers providing health and social services for elderly people were randomly assigned to the experimental condition, the dual-process bereavement group intervention-Chinese (DPBGI-C) and to the control condition, the loss-oriented bereavement group intervention-Chinese (LOBGI-C). Both interventions comprised weekly, 2-hr sessions for 7 weeks followed by a 4-hr outing in the eighth week. Of 215 widowed older adults contacted and assessed, 125 eligible participants were interviewed three times-preintervention, postintervention, and at a 16-week follow-up-to assess complicated grief symptoms, anxiety, depression, loneliness, and social support. RESULTS: Using intention-to-treat analysis, both interventions produced improvements in grief, depression, and social support, but effect sizes were larger with the DPBGI-C. The participants in the DPBGI-C condition also reported reduced anxiety, emotional loneliness, and social loneliness, whereas those in the LOBGI-C condition did not. There were interactions between intervention type and time with respect to grief, anxiety, emotional loneliness, and social loneliness. DISCUSSION AND IMPLICATIONS: Although traditional LOBGI-C can help to reduce grief and depression in bereaved older adults, the DPBGI-C was found to be superior as it had a greater and more extensive impact on outcomes. This is the first study of the effectiveness of this evidence-based, theory-driven intervention for widowed Chinese older adults and has implications for theory building and practice.

Music thanatology: prescriptive harp music as palliative care for the dying patient.

Music thanatology represents an emerging area in which the raw materials of music, usually harp and/or voice, assist and comfort the dying patient. During prescriptive "music vigils, " the clinician-musician carefully observes physiological changes, cues, and breathing patterns, thereby synchronizing the music to reflect or support the patient's physiology and overall condition. Using data collected from 65 patients, this study was designed to assess the effectiveness of prescriptive harp music on selected palliative care outcomes using a sample of de-identified data forms from past music vigils. Patients were administered a 25- to 95-minute intervention of prescriptive harp music. Data collected included vital signs and observational indicators before (Ti) and after (T2) the vigil. Patients were more likely to experience decreased levels of agitation and wakefulness while also breathing more slowly and deeply with less effort at the conclusion of the music vigil. Results from this study suggest that a prescriptive vigil conducted by a trained music thanatologist could provide an effective form of palliative care for dying patients.

"One Size Doesn't Fit All" - Partners in Hospice Care, an Individualized Approach to Bereavement Intervention.

We concluded in a recent study that a "one size fits all" approach typical of group interventions often does not adequately accommodate the range of situations, life experiences, and current needs of participants. We describe how this limitation informed the design and implementation of an individually-delivered intervention format more specifically tailored to the unique needs of each bereaved person. The intervention comprises one of three interrelated studies within Partners in Hospice Care (PHC), which examines the trajectory from end-of-life care through bereavement among cancer caregivers using hospice. The PHC intervention employs an initial needs assessment in order to tailor the session content, delivery, and sequencing to the most pressing, yet highly diverse needs of the bereaved spouses/partners. Although an individually-delivered format has its own challenges, these can be effectively addressed through standardized interventionist training, regular communication among staff, as well as a flexible approach toward participants' preferences and circumstances.

Friend and family contact and support in early widowhood.

OBJECTIVES: This study explored the relative contributions of friends and family to the social and emotional well-being of women and men in the first 2-6 months following the death of their spouse or partner. METHODS: Three hundred and twenty-eight widowed men (39%) and women aged 50 and older completed self-administered questionnaires that included measures of contact and satisfaction with friends and family, as well as measures of affective (i.e., grief and depression) and self-evaluative (i.e., coping self-efficacy, mastery, self-esteem) responses to loss. RESULTS: Regression analyses supported the positive features of social support and interaction but particularly highlight the role of friends: ease of contact and satisfaction with friendship support were associated with more positive self-evaluative aspects of loss; greater frequency of friendship help was associated with more negative affective reactions, whereas higher satisfaction with friendship support was associated with more positive affective reactions. DISCUSSION: These analyses support the voluntary and socializing functions of friendship and social support, bolstering individuals during stressful life transitions, advancing our understanding of the underexamined and particularly distinct functions of friendship in the early phases of spousal loss.

Feeling lonely versus being alone: loneliness and social support among recently bereaved persons.

OBJECTIVES: Despite increases in social support following widowhood, loneliness is among the most frequently reported challenges of bereavement. This analysis explores the dynamic relationship between social support and loneliness among recently bereaved older adults. METHODS: Using longitudinal data from "Living After Loss" (n = 328), latent growth curve modeling was used to estimate changes in loneliness and social support during the first year and a half of bereavement among older adults aged 50+. RESULTS: Both loneliness and social support declined over the first year and a half of bereavement. Greater social support was associated with lower levels of loneliness overall, but the receipt of social support did not modify one's expression of loneliness over time. Loneliness was more highly correlated with support from friends than family. Together, social support from both friends and family accounted for 36% of the total variance in loneliness. DISCUSSION: There is conceptual and empirical overlap between the concepts of loneliness and social support, but results suggest that loneliness following widowhood cannot be remedied by interventions aimed only at increasing social support. Social support, especially that from friends, appears to be most effective if it is readily accessible and allows the newly bereaved an opportunity to express him/herself.

Coping processes among bereaved spouses.

The authors investigated if an intervention based on the dual process model (vs. traditional bereavement support) enhanced oscillation between loss- (LO) and restoration-oriented (RO) coping of recently bereaved (2-6 months) spouses/partners. Participants were followed over 12 months. The authors found an increased emphasis over time on RO coping, particularly for women and those who were younger; however, no treatment effect was detected. Although patterns in the data are consistent with the model, the authors conclude that it is difficult for interventions to modify LO, RO, and oscillation unless there is sufficient intervention dosage and tailored to those exclusively engaged in one process.

Time for living and caring: an intervention to make respite more effective for caregivers.

This article presents the rationale for and description of a promising intervention, Time for Living and Caring (TLC), designed to enhance the effectiveness of respite services for family caregivers. It is guided by the theoretical principles of the Selective Optimization with Compensation (SOC) model, which individually coaches caregivers on how to assess their personal circumstances, identify their greatest needs and preferences, and engage in goal setting and attainment strategies to make better use of their respite time. Focusing on respite activities that match caregivers' unique needs is likely to result in improved well-being. We report on a pilot study examining TLC's feasibility and potential benefits and how caregivers viewed their participation. While additional research is needed to test and refine the intervention, we need to find more creative ways to enhance respite services.

An Evaluation of the Living After Loss Intervention - Part 2: Do Bereavement-Related Outcomes Vary by the Dynamics of Support Groups?

Group-based interventions for recently bereaved spouses may provide support and friendship through the commonality of experiences that are shared among the members of the group. This study compares the experiences and characteristics of persons in 35 different support groups from the Living After Loss (LAL) study, with particular emphasis on the question: Does the chemistry of the group affect the longer term adjustment outcomes associated with bereavement? Results suggest that, perhaps, those groups that foster the greatest sense of mutual support and have the most effective group leaders may be associated with more favourable bereavement-related outcome, especially stress related growth. Challenges associated with evaluating the effectiveness of group-based interventions are also discussed.

An Evaluation of the Living After Loss Intervention - Part 1: Do Bereavement-Related Outcomes Vary by the Content of Support Groups?

This article explores whether the substantive content and specific topics addressed during a 14-week support group can alter the bereavement-related outcomes of widowed older adults over time. It draws on data from the Living After Loss study, which developed a novel support group based on the Dual Process Model of bereavement and provides empirical evidence tracking the longitudinal outcomes of older bereaved spouses. Findings suggest that unless the content is universally relevant, the messaging and topics addressed during the support group do not alter the bereavement-related outcomes of widowed persons over time.

Grief, depressive symptoms, and physical health among recently bereaved spouses.

PURPOSE: Widowhood is among the most distressing of all life events, resulting in both mental and physical health declines. This paper explores the dynamic relationship between physical health and psychological well-being among recently bereaved spouses. DESIGN AND METHODS: Using a sample of 328 bereaved persons who participated in the "Living After Loss" study, we modeled trends in physical health, somatic symptoms, and psychological well-being over the first year and a half of widowhood. The primary focus is whether physical health at the time of widowhood modifies psychological well-being over time. RESULTS: There were considerable somatic symptoms during the earliest months of bereavement but no major health declines over the first year and half of bereavement. Those in poor health had initially higher levels of grief and depressive symptoms, but the trajectories or changes over time were similar regardless of health status. Those with poor health at the time of widowhood had significantly higher risks of complicated grief and major depression disorder. IMPLICATIONS: Bereavement requires physical and emotional adjustment, but the psychological trajectory of bereavement may be somewhat universal. Bereavement support ought to include a focus on self-care and health promotion in addition to emotional support, especially because those with poor health initially may be most susceptible to prolonged and intense clinical distress.