Elaine Wittenberg-Lyles

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.

Family Caregiver Participation in Hospice Interdisciplinary Team Meetings: How Does It Affect the Nature and Content of Communication?

Collaboration between family caregivers and health care providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet biweekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregivers participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socioemotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.

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.

Informal hospice caregiver pain management concerns: A qualitative study

Background: Informal, unpaid, family caregivers provide much hospice care in the United States. These caregivers suffer physically, psychologically, emotionally, and socially from the burden of caring. The most often identified area of caregiver burden is the management of end-of-life pain. However, little empirical evidence exists of effective interventions to help caregivers manage end-of-life pain, and issues surrounding caregiver pain management remain vague and undefined. Understanding these concerns will inform the design of effective caregiver interventions. Aim: The purpose of this study was to describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients. Design: A content analysis of secondary data, namely, recordings of caregiver interviews, was conducted to describe pain management issues. These interviews were part of a larger clinical trial. Setting/participants: Multiple sessions with 29 informal caregivers, of patients dying of cancer, were audio-recorded. Subjects were purposively selected from two hospice programs in the Northwestern United States. Caregivers of noncancer patients were excluded from the study sample. Results: A framework of six major themes with subordinate subthemes was developed through a literature review and peer review. The framework was used to organize the content of 87 caregiver interviews. The six major themes identified in the analysis included Caregiver-Centric Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Communication and Teamwork Issues, Organizational Skill Issues, and Patient-Centric Issues. Conclusion: This analysis clearly articulated and classified caregiver issues surrounding pain management. Future hospice research may benefit from the use of this analysis and framework in the development of tools to alleviate this major cause of caregiver burden.

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.

Implementation Science: Implications for Intervention Research in Hospice and Palliative Care

This article provides a general introduction to implementation science-the discipline that studies the implementation process of research evidence-in the context of hospice and palliative care. By discussing how implementation science principles and frameworks can inform the design and implementation of intervention research, we aim to highlight how this approach can maximize the likelihood for translation and long-term adoption in clinical practice settings. We present 2 ongoing clinical trials in hospice that incorporate considerations for translation in their design and implementation as case studies for the implications of implementation science. This domain helps us better understand why established programs may lose their effectiveness over time or when transferred to other settings, why well-tested programs may exhibit unintended effects when introduced in new settings, or how an intervention can maximize cost-effectiveness with strategies for effective adoption. All these challenges are of significance to hospice and palliative care, where we seek to provide effective and efficient tools to improve care services. The emergence of this discipline calls for researchers and practitioners to carefully examine how to refine current and design new and innovative strategies to improve quality of care.

‘They’re part of the team’: participant evaluation of the ACTIVE intervention

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

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.

Hospice Caregivers' Experiences With Pain Management: “I'm Not a Doctor, and I Don't Know if I Helped Her Go Faster or Slower”

CONTEXT Those caring for their loved ones in hospice experience tremendous stress, being faced with numerous decisions as they work to manage the pain experienced by their loved one. Although hospice care teams create pain management strategies, it is the role of the caregiver to implement these plans. OBJECTIVES The purpose of this study was to further understand the hospice caregiver experience relating to pain management. METHODS Semistructured interviews with 146 caregivers provided data for the study. Responses to seven questions asking for a ranking of end-of-life pain management indicated a less than ideal experience. Available narratives from 38 caregivers were analyzed for themes related to further understanding of the concerns. RESULTS Five themes were identified in the data including difficulty with administration of pain medicines, concerns about side effects of medications, insecurity with pain assessment, frustrations with communication among health care team members, and memories of unrelieved pain. CONCLUSION These findings should raise concern among hospice professionals, whose commitment is to the management of pain, including emotional pain, with a focus on both the patient and the family as a unit of care. These data clearly suggest that hospice providers have an opportunity to be sensitive to perceptions held by caregivers regarding pain management. Effective planning for pain control must incorporate the values and beliefs not only of each patient but also of the family caregiver.

COMFORT: Evaluating a New Communication Curriculum With Nurse Leaders

Nursing faculty face increasing instructional demands to keep pace with mounting knowledge and competency requirements for student nurses. In the context of nursing practice, tasks and time pressures detract from the high skill and aptitude expectation of communication. The communication, orientation and opportunity, mindful presence, family, openings, relating, and team (COMFORT) curriculum, an acronym that represents 7 basic nursing communication principles, has been introduced into the communication module of the End-of-Life Nursing Education Consortium, which currently provides the only standardized undergraduate and graduate nurse training in hospice and palliative care. This study examines the potential efficacy of the COMFORT curriculum for everyday communication challenges experienced by members of the Georgia Organization of Nurse Leaders. Participants were prompted to describe communication barriers and then apply an aspect of the COMFORT curriculum to this barrier. Responses revealed primary communication barriers with co-workers and patient/families. Nurses predominantly identified directly correlating components in the COMFORT framework (C-communication, F-family) as solutions to the topics described as barriers. Based on confirmation of extant literature addressing generalist nurse communication challenges, there is support for the inclusion of COMFORT across the nursing curriculum to efficiently and effectively teach communication strategies to nurses.