When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.

Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process.

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.

Family caregivers' perspectives on communication with cancer care providers.

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63). Participants: Participants were family caregivers of adult patients with cancer. Most were patients' spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment. Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers' experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers. Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals' experiences beyond their prescribed roles of "cancer patient" and "caregiver." Implications for Psychosocial Oncology Practice: Psychosocial oncology providers' strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers' potentially different communication preferences.

Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience.

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

Delivering problem-solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care.

OBJECTIVE: In response to the well-documented need for evidence-based cancer caregiver support, we examined the feasibility of problem-solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem-solving therapy on family caregivers' anxiety, depression, and quality of life. METHODS: We conducted a feasibility study of a structured problem-solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem-solving therapy intervention, which was delivered over three sessions via web-based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. RESULTS: Problem-solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem-solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). CONCLUSIONS: Problem-solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

Exploring the Challenges that Family Caregivers Faced When Caring for Hospice Patients with Heart Failure.

Although patients with heart disease comprise the second largest diagnostic group in hospice care, the challenges faced by family caregivers of hospice patients with heart failure are poorly understood and often go unaddressed. This study explored the challenges and needs of family caregivers of adults with advanced heart failure receiving hospice care in the home. The baseline quantitative and qualitative data from 28 family caregivers' participation in a large-scale hospice clinical trial of a problem-solving therapy intervention were analyzed. The quantitative data showed that family caregivers were mildly anxious and had worse financial and physical quality of life than their social and emotional quality of life. The qualitative data showed that caregiver challenges were related to patient care and symptom management, inadequate social support, communication issues, and financial concerns. The results provide insight to hospice social workers and researchers to develop practical tools that can be used in routine care to evaluate family caregivers' needs comprehensively.

Differential effects of patient symptom subtypes on informal hospice caregiver depression.

ABSTRACTObjective:Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not. METHOD: Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale-Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire-9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation. RESULTS: Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample. SIGNIFICANCE OF RESULTS: Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.

Team functioning in hospice interprofessional meetings: An exploratory study of providers' perspectives.

Interprofessional collaboration is the foundation of hospice service delivery. In the United States, hospice agencies are required to regularly convene interprofessional meetings during which teams review plans of care for the patients and families they serve. A small body of research suggests that team functioning could be significantly enhanced in hospice interprofessional meetings; however, systematic investigation of this possibility has been limited to date. The purpose of this qualitative study was to better understand the experiences and perspectives of hospice providers who regularly participate in interprofessional meetings as a first step toward improving teamwork in this setting. We interviewed 24 hospice providers and conducted a template analysis of qualitative data to identify barriers and facilitators to effective team functioning in interprofessional meetings. Participants recognised the ways meetings supported high-quality, holistic patient and family care but voiced frustrations over meeting inefficiencies, particularly in light of caseloads they perceived as overly demanding. Time constraints were often viewed as prohibiting the inclusion of interprofessional content and full participation of all team members. Findings suggest that modifications to interprofessional meetings such as standardising processes may enhance meeting efficiency and team functioning.

Hospice and palliative social workers' experiences with clients at risk of suicide.

OBJECTIVE: We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice. METHOD: We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals. RESULTS: Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice. SIGNIFICANCE OF RESULTS: These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.

Conducting the ACTIVE randomized trial in hospice care: keys to success.

BACKGROUND: Untreated pain is common for patients at the end of life. Informal caregivers, often family or friends of patients, are responsible for working with hospice staff to provide pain management. Interdisciplinary team meetings conducted in hospices every 2 weeks provide an opportunity for hospice staff to communicate about pain management with informal caregivers of hospice patients. PURPOSE: We present challenges, solutions, and keys strategies for carrying out a randomized trial in the hospice setting. METHODS: We are conducting the Assessing Caregivers for Team Intervention through Video Encounters (ACTIVE) study to determine whether regular videoconferencing between hospice patients' informal caregivers and the hospice care team alters caregivers' perceptions of pain management and patients' pain. Participants must be primary caregivers for a hospice patient, at least 18 years of age, capable of providing informed consent, and have access to a computer with a high-speed Internet connection or a telephone. We randomized caregivers to participate in biweekly team meetings through video or phone conferencing (intervention) or to receive usual care from the hospice. All patients receive standard hospice care regardless of the group assignment of their informal caregiver. RESULTS: As of 1 July 2012, there have been 1038 new admissions to the participating hospices. Of 391 cases in which no contact was made, 233 patients had died or had life expectancy less than 14 days. Home visits were made to 271 interested and eligible caregivers; 249 caregivers of 233 patients were randomly assigned to the usual care or intervention arm. Enrollment is on pace to meet recruitment goals. Lessons Learned Thorough pilot testing of instruments and procedures helped us overcome barriers to conducting research in this vulnerable population. Keys to success included obtaining support from hospice medical directors, including hospice staff in study preparation, minimizing the burden on hospice staff, housing research staff in each participating hospice, using newsletters to enhance communication, developing and maintaining a detailed procedural manual, producing regular data quality reports, developing a secure site to facilitate coding videos for qualitative studies, and holding regular teleconferences with key staff. LIMITATIONS: Late enrollment of many patients in hospice left little to no time for their caregivers to take part in the intervention. Assisting caregivers of patients with very short life expectancy may require different methods. CONCLUSIONS: The challenges of conducting randomized trials with hospice patients and caregivers can be addressed with appropriate study design, well-tested research methods, and proactive monitoring of any issues or problems.

Hospice caregiver depression: the evidence surrounding the greatest pain of all.

Terminal illness affects the entire family, both the one with the illness and their loved ones. These loved ones must deal not only with the loss but with the challenges of managing daily care. The purpose of the systematic review of the peer-reviewed literature was to identify and explore depression and related interventions for caregivers of hospice patients. While the prevalence of depression reported in the identified studies of hospice caregivers ranges from 26-57%, few interventions specific to this population have been tested and the research methods have been only moderately rigorous.

Telehealth group interactions in the hospice setting: assessing technical quality across platforms.

OBJECTIVE: This study aims to examine the technical quality of videoconferencing used in hospice to engage caregivers as "virtual" members of interdisciplinary team meetings and their impressions of telehealth. Furthermore, it aims to compare the quality of plain old telephone service (POTS) and Web-based videoconferencing and provide recommendations for assessing video quality for telehealth group interactions. MATERIALS AND METHODS: Data were obtained from an ongoing randomized clinical trial exploring Web-based videoconferencing and a completed prospective study of POTS-based videoconferencing in hospice. For the assessment of the technical quality, an observation form was used. Exit interviews with caregivers assessed impressions with the use of telehealth. A retrospective analysis of video-recorded team meetings was conducted rating attributes essential for the quality of videoconferencing (e.g., video artifacts, sharpness). RESULTS: In total, 200 hospice team meetings were analyzed, including 114 video-recorded team meetings using Web-based videoconferencing and 86 meetings using POTS videophones. A direct comparison between the two modalities indicates the superiority of Web-based video in image quality but less so in audio quality. Transcripts of 19 caregiver interviews were analyzed. Caregivers found the use of videoconferencing to be a positive experience and a useful and essential tool to communicating with the hospice team. CONCLUSIONS: This study highlights the potential of telehealth to improve communication in hospice and the need for new tools that capture the quality of video-mediated communication among multiple stakeholders and strategies to improve the ongoing documentation of telehealth group sessions' technical quality.

Qualitative evaluation of a problem-solving intervention for informal hospice caregivers.

BACKGROUND: Informal hospice caregivers may experience compromised well-being as a result of significant stress. Although quite limited, problem-solving interventions with this population have garnered empirical support for improved caregiver well-being. AIM: Researchers sought to answer the following question: which specific intervention processes impacted informal hospice caregivers who participated in a problem-solving intervention? DESIGN: Researchers conducted a thematic analysis of open-ended exit interviews with informal hospice caregivers who had participated in a structured problem-solving intervention. SETTING/PARTICIPANTS: Participants were friends and family members who provided unpaid care for a home hospice patient receiving services from one of two hospice agencies located in the Pacific Northwest region of the United States. RESULTS: During their participation in the problem-solving intervention, caregivers actively reflected on caregiving, structured problem-solving efforts, partnered with interventionists, resolved problems, and gained confidence and control. CONCLUSIONS: The study findings provide much needed depth to the field's understanding of problem-solving interventions for informal hospice caregivers and can be used to enhance existing support services.

Stress variances among informal hospice caregivers.

Care interventions are not routinely provided for hospice caregivers, despite widespread documentation of the burden and toll of the caregiving experience. Assessing caregivers for team interventions (ACT) proposes that holistic patient and family care includes ongoing caregiver needs assessment of primary, secondary, and intrapsychic stressors. In this study, our goal was to describe the variance in stressors for caregivers to establish evidence for the ACT theoretical framework. We used secondary interview data from a randomized controlled trial to analyze hospice caregiver discussions about concerns. We found variances in stress types, suggesting that caregiver interventions should range from knowledge and skill building to cognitive-behavioral interventions that aid in coping. Family members who assume the role of primary caregiver for a dying loved one need to be routinely assessed by hospice providers for customized interventions.

Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

A Goal-Directed Model of Collaborative Decision Making in Hospice and Palliative Care.

Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.

Hospice Family Caregiver Perceptions of Benefits and Challenges of a Telenovela Educational Intervention.

Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).

The physician's role in patients' nursing home care: "She's a very courageous and lovely woman. I enjoy caring for her".

More than 1.5 million adults live in US nursing homes, and approximately 30% of individuals in the United States will die with a nursing home as their last place of residence. Physicians play a pivotal role in the rehabilitation, complex medical care, and end-of-life care of this frail and vulnerable population. The reasons for admission are multifactorial and a comprehensive care plan based on the Minimum Data Set guides the multidisciplinary nursing home team in the care of the patient and provides assessments of the quality of care provided. Using the cases of 2 patients with different experiences, we describe the physician's role in planning for admission, participating as a team member in the ongoing assessment and care in the nursing home, and guiding care at the end of life. The increasing population of older adults has also promoted community-based and residential alternatives to traditional nursing homes. The future of long-term care will include additional challenges and rich innovations in services and options for older adults.