Hospice Family Caregivers Research Articles

Supporting home hospice family caregivers: Insights from different perspectives.

Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05). Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Sleep Problems, Anxiety, and Global Self-Rated Health Among Hospice Family Caregivers.

Although research has linked sleep problems, anxiety, and poor health outcomes among patients' family members in nonhospice settings, little is known about these often interrelated issues among hospice family caregivers. We sought to examine the relationships between sleep problems, anxiety, and global self-rated health among hospice family caregivers. Methods, Setting, and Patients: We conducted a secondary analysis of quantitative data from 395 family caregivers of hospice patients in the Midwest and Southeastern United States. Nearly one-third of the hospice family caregivers who participated in this study experienced clinically noteworthy levels of sleep problems and/or anxiety. Caregivers' symptoms of anxiety and sleep problems were strongly correlated. Caregivers who reported more frequent sleep problems and higher levels of anxiety reported poorer overall health. Hospice providers, who are charged with attending to the needs of both patients and their family caregivers, may improve their practice by regularly assessing for sleep problems and anxiety among family caregivers and providing appropriate interventions or referrals.

Gender Differences in Caregiving at End of Life: Implications for Hospice Teams.

Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers

Background: Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider–patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. Aim: We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. Design: We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Setting/participants: Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Results: Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. Conclusion: The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.

Coping Responses Among Hospice Family Caregivers: A Confirmatory Factor Analysis

ContextHospice family caregivers must often cope with significant stressors. Research into the ways caregivers attempt to cope with these stressors has been challenged by pronounced difficulties conceptualizing, measuring, and categorizing caregiver coping. ObjectivesThe purpose of this study was to begin addressing these challenges by determining the structure of coping among hospice family caregivers. MethodsHospice family caregivers (n = 223) residing in the midsouthern U.S. completed the Ways of Coping Questionnaire as part of a cross-sectional survey. To examine the validity of various coping response factor structures, researchers conducted multiple confirmatory factor analyses. ResultsAlthough individual coping behaviors were able to be sorted into broader “ways of coping” (i.e., first-order factors), data did not support the further grouping of ways of coping into more general “families of coping” (i.e., second-order factors). Folkman and Lazarus's proposed structure of coping, which comprises eight first-order factors or subscales, better fit the data than the tested alternatives. ConclusionDespite its broad appeal, grouping ways of coping responses into families of coping based on the presupposed nature of the responses (e.g., positive or negative) lacked empirical support for this sample of hospice family caregivers, which suggests that relying on families of coping may oversimplify complex responses from caregivers. Rather than trying to characterize coping responses into broader families, hospice support for caregiver coping strategies may be more effective when based on individualized assessments of each caregiver's ways of coping and the consequences of those coping responses on their quality of life.

Correlates and Predictors of Conflict at the End of Life Among Families Enrolled in Hospice

ContextDespite the palliative care mandate to view family as the unit of care, and the high prevalence and detrimental consequences of conflict at the end of life, little research has been conducted with hospice families to understand what contributes to family conflict. ObjectivesUsing a recently generated explanatory matrix of family conflict at the end of life, this study sought to identify the correlates and predictors of family conflict. MethodsAs part of a larger mixed methods cross-sectional study, a 100-item survey was administered to 161 hospice family caregivers enrolled in a Medicare/Medicaid certified non-profit hospice organization located in the Midwest U.S. ResultsAlthough overall levels of conflict were relatively low, 57% of hospice caregivers reported experiencing some family conflict at the end of life. Contextual variables associated with family conflict included a history of family conflict, female gender, younger caregiver age, presence of children in the home, and less advance care planning discussions. Significant main effects in the prediction of family conflict in the final hierarchical multiple regression model included prior family conflict, caregiver age, caregiver gender, advance care planning discussions, family “coming out of the woodwork,” communication constraints, and family members asserting control. The model explained 59% of the variance in family conflict. ConclusionResults support the multidimensional theoretical model of family conflict specifying the importance of the family context, key conditions that set the stage for conflict, and essential contributing factors. Implications for routine assessment and screening to identify families at risk and recommendations for future research are highlighted.

Organization, teamwork, and advocacy: Important skills needed by hospice family caregivers who manage medications.

121 Background: In the home hospice setting, family caregivers (CGs) often assume medication administration responsibilities traditionally performed by licensed nurses. Little is known about how to assess and support CG medication management skills. As part of an ongoing study of nurse-caregiver interactions in home hospice, we gathered data on CG medication management needs. Methods: A longitudinal, multicenter study of home hospice nurse visits captured audiorecorded communication between nurses and CGs. Participants included patients with cancer and their self-identified CGs who were recruited upon home hospice enrollment. The current sub-study included participants aged ≥65 and their family CGs from 7 hospice agencies. Two investigators independently coded transcriptions of the first audio recorded nurse home visit using a directive content analytic approach to map conversations to a previously published, interview-derived, framework for hospice medication management by CGs. Results: A total of 18 patients (mean age 76.5 [SD 10.7], 56% female) and their CGs (mean age 59.6 [SD13.4], 78% female) were included. Content analysis revealed that CG skills needed for medication management are not limited to drug knowledge. Complicated organizational skills are needed to track medication acquisition and dosing, record the use of short- and long-acting drugs with similar modes of action, and coordinate medication administration by multiple CGs. Teamwork skills are needed to help coordinate medication prescribing between specialist, primary, and hospice physicians. CGs also need symptom management skills regarding the proper selection of medications, as well as skills to manage side effects, inadvertent errors, and possible medication related-emergencies. CGs play a vital role in patient advocacy, alerting providers to the burden and quality of life issues related to medication use, including whether medications have intended or unintended effects, or are potentially unnecessary or causing harm. Conclusions: CGs must have multiple skills to effectively manage medications in home hospice. A systematic approach and intervention is needed to support CGs’ medication management skills.

Rethinking Family Caregiving: Tailoring Cognitive-Behavioral Therapies to the Hospice Experience

Hospice family caregivers experience significantly higher rates of psychological distress than demographically similar noncaregivers. Interventions based on cognitive-behavioral therapy have been shown to reduce psychological distress in the general population by providing tools to modify thinking patterns that directly affect emotions and behavior. Such interventions might reasonably be incorporated into hospice social work; however, numerous contextual factors must be taken into account to ensure that any interventions are appropriate to the unique needs of clients. The purpose of the study discussed in this article was to contex- tualize one aspect of the cognitive-behavioral model based on firsthand accounts of hospice family caregivers. Following a modified grounded theory approach, researchers engaged in a secondary analysis of data from a larger study provided in a subsample of 90 audio-recorded conversations between hospice family caregivers and interventionists. Findings indicated that distressed caregivers engaged in five dominant thinking patterns: (1) "should" statements, (2) catastrophizing or minimizing, (3) personalizing, (4) absolute thinking, and (5) making assumptions. Implementing cognitive-behavioral therapies based on identified caregiver thinking patterns will allow hospice social workers to empower caregivers to cope more effectively with the numerous stressors they encounter while caring for a dying loved one.

The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike.

Exploring Occupation Roles of Hospice Family Caregivers from Māori, Chinese and Tongan Ethnic Backgrounds Living in New Zealand

A major challenge to occupational therapists working in palliative care is determining the best ways to help family caregivers who are caring for family members. The purpose of this study was to explore palliative caregiver occupations among Māori, Chinese and Tongan ethnicities. Six informants participated, one woman and one man from each ethnic group. In each of their homes, informants were asked to discuss what it was like caring for their dying family member. The occupational themes resulting from these interviews were food preparation, spirituality and family gathering. Therapists need to be aware of the differences in how people care for family members within their ethnicity. Implications are that occupational therapists can help families identify activities important to them within the main occupational themes: different types of foods and their preparations, various ways to express spirituality and how families gather together members of their extended family. Further, clinicians need to take on the role of a "not-knowing" but curious health-care provider in order to meet the needs of caregivers. The limitation was the small number of participants who all lived in one geographic area. Future studies should include a wider group of ethnicities.

Understanding Social Support Burden Among Family Caregivers

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.

Advancing Theory of Family Conflict at the End of Life: A Hospice Case Study

ContextAlthough family conflict is a common occurrence for families involved in caregiving for a dying family member, it has not been examined in the hospice context. ObjectivesThe purpose of this study was to advance theory of family conflict at the end of life through replication and expansion of a case study involving professional perspectives in the context of a managed care program for low-income elders with advanced chronic disease in their last six months of life, by exploring the perceptions of professionals and family caregivers experiencing conflict in the hospice context. MethodsData were gathered through in-depth interviews with 15 hospice family caregivers experiencing substantial family conflict, and focus groups with 37 professionals employed in a large multicounty and nonprofit hospice in the Midwest U.S. Dimensional analysis, a method for the generation of grounded theory, was used to refine and expand an explanatory matrix of family conflict at the end of life. ResultsThe initial matrix was expanded through the inclusion of eight new and two refined categories, strengthening our understanding of family conflict as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. ConclusionThe study findings are discussed in terms of implications for assessment and intervention.

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

ObjectiveThe goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. MethodsEmpathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. ResultsData analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. ConclusionAlthough hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Practice implicationsHospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.

The Impact of Family Communication Patterns on Hospice Family Caregivers

Family caregivers often rely on clinicians to initiate family discussions about hospice and care of the dying1. Mortality communication, or talk between terminally-ill patients and families about impending death, is encouraged in hospice 2. Most terminally-ill patients use this time to discuss spiritual and psychosocial matters not previously broached between family members 3. Families with open communication prior to the disease maintain the pattern throughout the illness as the situation prompts families to view this as a time to be together 4. However, not all families are able to have open conversations about dying and death. Some families attempt to hide hospice care and instruct healthcare providers not to mention hospice in front of the patient, not to tell the patient that they are terminal, and not to talk about dying and death in front of the patient 5. Overall, families of hospice patients report difficulty talking about the process of dying and death 5. This study investigated concerns shared by informal caregivers (friends or family members) who were designated or legally appointed as the family caregiver of a hospice patient to learn more about family communication patterns during hospice caregiving. We hereafter refer to this group as family caregivers.

Commentary on Tang W‐R (2009) Hospice family caregivers’ quality of life. Journal of Clinical Nursing 18, 2563–2572

Commentary on Tang W‐R (2009) Hospice family caregivers’ quality of life. <i>Journal of Clinical Nursing</i> 18, 2563–2572

Hospice family caregivers’ quality of life

To study quality of life (QOL) and its important correlates among family caregivers of terminally ill patients receiving in-home hospice care. Caregiver QOL has been identified as a core outcome variable in studies of dying patients and their families, but few studies have assessed QOL among caregivers of patients with terminal illness, particularly those in hospice care. For this cross-sectional correlational study, 60 caregivers were recruited from two local in-home hospice programmes in the Midwestern United States. Self-report data were provided by caregivers using the Caregiver Quality of Life Index - Cancer, Spiritual Well-Being Scale, American Pain Society Patient Outcomes Questionnaire, Eastern Cooperative Oncology Group Performance Status Rating and Medical Outcome Study Social Support Survey to measure their QOL, spirituality, health status and social support. Caregivers' educational status, physical health status, spirituality and qualitative and quantitative social support, as a set, explained 42% of the variance in their QOL. Caregivers with higher education, better physical health status, greater spirituality and more qualitative and quantitative social support, had a significantly better QOL. QOL for this sample of hospice caregivers was significantly predicted only by physical health status and spirituality, likely because of collinearity among the independent variables. Additional research is needed to explore the factors that sustain or promote caregivers' QOL over time. In the delivery of hospice services, the family caregiver is both a vital member of the health care team and a recipient of care. Health care providers should therefore pay more attention to the health status and spirituality of major caregivers, thus helping them maintain and improve their QOL.

Exploring Videophone Communication Between Hospice Teams and Family Caregivers During Interdisciplinary Team Meetings (741)

Exploring Videophone Communication Between Hospice Teams and Family Caregivers During Interdisciplinary Team Meetings (741)

Bereaved Hospice Caregivers' Perceptions of the End-of-Life Care Communication Process and the Involvement of Health Care Professionals

This study was conducted to gain an understanding of bereaved hospice family caregivers' perceptions of the communication process from initial discussion of the need for end-of-life care and hospice through the decision to choose hospice and the transition home. One hundred eight bereaved hospice caregivers that were 36 months postpatient death responded to a quantitative mailed survey. Aspects of the end-of-life care communication process, including involvement of health care professionals at each step, were assessed. Serious illness and the need for hospice care were first mentioned to patients and caregivers by physicians. Often the caregivers recalled only one meeting in which hospice was discussed. Other than the physicians, social workers were the professionals most often present in at least one of these meetings. Nurses and social workers were both perceived to be helpful in the transition to home hospice. Social workers were reported to be most comfortable with discussion of end-of-life care, most knowledgeable, and most available during the communication process that led to a decision about end-of-life care. Suggestions that these caregivers had to improve communication with health care professionals were categorized from responses to an open-ended survey question as: the need to discuss vital information earlier and what to expect for care at end stage; be more forthcoming about reality of death; and treat people as individuals. Although many health care professionals play a role in the communication and transition to hospice care, physicians and social workers were found to be pivotal participants in this process. A coordinated team approach to end-of-life communication and decision-making may facilitate the process and possibly lead to increased and earlier referral to hospice.

Family Caregiver Perception of Hospice Support

Applying Roy's Adaptation Model, the purposes of this study were to explore hospice support of family caregivers in their decision to provide care at home and the relationships between hospice support, coping, and spiritual well-being. Data were collected in home visits of 21 recently bereaved family caregivers of hospice patients. Instruments included a demographic questionnaire, a Hospice Social Support questionnaire, the Jalowiec Coping Scale, the Spiritual Well-Being Scale, and a postbereavement interview. Hospice workers were frequently identified as providing significant emotional support making the caregiver feel highly cared for, respected, and supported. Subjects scored moderately high on the SWB Scale and reported low use of coping strategies. A significant negative correlation was found between reported use of coping strategies and hospice support. Hospice family caregivers rated this support highly as a major factor in making and sustaining the home care decision.

Depression in Rural Hospice Family Caregivers

Informal, family caregivers assume an overwhelming responsibility to care for the dying in the home. Although not a long term situation, the outcomes for family hospice caregivers often have negative consequences with minimal mental health resources available in rural settings. Diagnosis and treatment of depression in caregiving has been underdiagnosed. Few studies have identified depression and treatment specifically in hospice family caregivers. The purpose of this study was to determine if informal, hospice, family caregivers in rural settings were depressed and if so, were the caregivers receiving treatment for depression, either by conventional or non-conventional interventions. The descriptive study included 30 hospice family caregivers who reported on symptoms of depression. Forty percent of the hospice caregivers were depressed with only 17% receiving treatment for depression. Future studies should include exploring interventions and outcomes of depression to improve rural health care in caregivers. Key Words: Rural, Hospice, Caregiver, Depression, Conventional Treatment, Non-conventional treatment