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.
The purpose of this study was to describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients.
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.
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.
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.
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.
Caregivers; hospice care; pain; pain management; palliative care; end-of-life
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).
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.
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.
telecommunications; e-health; telehealth
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 two weeks provide an opportunity for hospice staff to communicate about pain management with informal caregivers of hospice patients.
We present challenges, solutions, and keys strategies for carrying out a randomized trial in the hospice setting.
We are conducting the ACTIVE study (Assessing Caregivers for Team Intervention through Video Encounters) 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.
As of July 1, 2012, there has 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.
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.
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.
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; randomized trial; pain management; videoconference; caregivers; interdisciplinary teams
Collaboration between family caregivers and healthcare providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet bi-weekly 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 caregiver’s 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 socio-emotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.
The ACTIVE (Assessing Caregivers for Team Intervention through Video Encounters) intervention uses technology to enable family caregivers to participate in hospice interdisciplinary team (IDT) meetings from geographically remote locations. Previous research has suggested that effective communication is critical to the success of these meetings. The purpose of this study was to explore communication in ACTIVE IDT meetings involving family caregivers and to assess the degree to which hospice teams use specific communication principles (summarized in the mnemonic VALUE: value, acknowledge, listen, understand, and elicit), which have been supported in previous research in intensive care settings.
Researchers analyzed team-family communication during 84 video- and/or audio-recorded care plan discussions that took place during ACTIVE team meetings, using a template approach to text analysis to determine the extent and quality of VALUE principles. The total content analyzed was 9 hours, 28 minutes in length.
Hospice clinicians routinely employed the VALUE communication principles in communication during ACTIVE IDT meetings with family caregivers, but the quality of this communication was frequently rated moderate or poor. The majority of such communication was task-focused. Less often, communication centered on emotional concerns and efforts to gain a more holistic understanding of patients and families.
This analysis suggests an opportunity for improving support for family members during ACTIVE IDT meetings. Members of hospice IDTs should remain aware of the opportunity for additional attention to the emotional realities of the hospice experience for family caregivers and could improve support for family caregivers during IDT meetings by ensuring that messages used to exemplify VALUE principles during team-family communication are of a high quality.
The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner.
Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings.
Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden.
Implications for Nursing Practice
By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver.
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.
Empathic opportunities and hospice team responses were analyzed from biweekly 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.
Data 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.
Although 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.
Hospice 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.
empathy; hospice; family caregiver
Purpose of the study
Problem-solving therapy (PST) has been found effective when delivered to informal caregivers of patients with various conditions. In hospice, however, its translation to practice is impeded by the increased resources needed for its delivery. The study purpose was to compare the effectiveness of a PST intervention delivered face-to-face with one delivered via videophone to hospice primary caregivers.
Design and methods
The study design was a randomized noninferiority trial with two groups, Group 1 in which caregivers received PST face-to-face, and Group 2 in which caregivers received PST via videophone. Family hospice caregivers were recruited from two urban hospice agencies and received the PST intervention (in three visits for Group 1 or three video-calls in Group 2) in an approximate period of 20 days after hospice admission. Standard caregiver demographic data were collected. Psychometric instruments administered to caregivers at baseline and at study completion included the CQLI-R (Caregiver Quality of Life Index–Revised), the STAI (State-Trait Anxiety Inventory), and the PSI (Problem-Solving Inventory).
One hundred twenty-six caregivers were recruited in the study; 77 were randomly assigned to Group 1 and 49 to Group 2. PST delivered via video was not inferior to face-to-face delivery. The observed changes in scores were similar for each group. Caregiver quality of life improved and state anxiety decreased under both conditions.
The delivery of PST via videophone was not inferior to face-to-face. Audiovisual feedback captured by technology may be sufficient, providing a solution to the geographic barriers that often inhibit the delivery of these types of interventions to older adults in hospice.
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.
Researchers sought to answer the following question: which specific intervention processes impacted informal hospice caregivers who participated in a problem-solving intervention?
Researchers conducted a thematic analysis of open-ended exit interviews with informal hospice caregivers who had participated in a structured problem-solving intervention.
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.
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.
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.
caregivers; hospices; intervention studies; problem solving; qualitative research
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.
caregivers/caregiving; coping and adaptation; end-of-life issues; illness and disease; life-threatening/terminal; psychosocial issues
The use of telehealth technologies to overcome the geographic distances in the delivery of hospice care has been termed telehospice. Although telehospice research has been conducted over the last 10 years, little is known about the comprehensive findings within the field. The purpose of this systematic article was to focus on available research and answer the question, What is the state of the evidence related to telehospice services? The article was limited to studies that had been published in the English language and indexed between January 1, 2000 and March 23, 2010. Indexed databases included PubMed and PsycINFO and contained specified key words. Only research published in peer review journals and reporting empirical data, rather than opinion or editorials, were included. A two-part scoring framework was modified and applied to assess the methodological rigor and pertinence of each study. Scoring criteria allowed the evaluation of both quantitative and qualitative methodologies. Twenty-six studies were identified with the search strategy. Although limited in number and in strength, studies have evaluated the use of a variety of technologies, attitudes toward use by providers and consumers, clinical outcomes, barriers, readiness, and cost. A small evidence base for telehospice has emerged over the last 10 years. Although the evidence is of medium strength, its pertinence is strong. The evidence base could be strengthened with randomized trials and additional clinical-outcome-focused research in larger randomized samples and in qualitative studies with better-described samples.
telehealth; technology; telemedicine; home health monitoring
To describe the current level of utilization of informatics systems in hospice and palliative care and to discuss two projects that highlight the role of informatics applications for hospice informal caregivers.
Published articles, web resources, clinical practice and ongoing research initiatives.
There are currently few informatics interventions designed specifically for palliative and hospice care. Challenges such as interoperability, user acceptance, privacy, the digital divide and allocation of resources all affect the diffusion of informatics tools in hospice.
Implications for nursing practice
Caregiver support through use of IT is feasible and may enhance hospice care.
informatics; hospice; palliative care; information technology; Internet
The telling of atrocity stories offers therapeutic benefits to healthcare providers. Transcripts of hospice interdisciplinary team (IDT) meetings were used to analyze strategies for telling atrocity stories in the performance of symbiotic niceness through criticism. Symbiotic niceness draws upon niceness messages to establish reciprocal niceness by others in order to facilitate emotional labor. In IDT meetings the two predominant strategy types used were indirect and direct criticism. Nurses and medical directors engaged in niceness message strategies mostly about patients and other healthcare professionals. The study concludes that hospice IDT meetings are a venue for team members to communicate symbiotic niceness through emotional labor.
team meetings; atrocity stories; hospice; interdisciplinary team
We investigated the feasibility of videophones for the delivery of problem-solving therapy (PST) for informal hospice caregivers. Informal hospice caregivers were randomly assigned to receive PST from researchers using videophones, instead of communicating in face-to-face sessions. Outcome measures included caregiver anxiety, quality of life and problem-solving abilities, technical quality of videosessions and satisfaction of participants (including both subjects and researchers). A total of 42 hospice caregivers were enrolled (mean age 62 years). A total of 112 videocall attempts were documented. Of these, 100 (89%) resulted in successful videocalls and 12 (11%) were cases in which a call was not established. The average videocall duration was 38 min (range 18–84 min). The overall technical quality of the videocalls was very good. Caregivers reported a slightly higher quality of life post-intervention than at baseline, although this was not significant. Caregivers reported lower levels of anxiety post-intervention than at baseline (P = 0.04). The subjects were generally satisfied with the videophones during their exit interviews.
Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This paper reports findings from a qualitative exploration of family members’ perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of fifteen residents’ family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members’ assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.
hospices; long-term care; adult family home; family
For many hospice caregivers, the constancy and difficulty of caregiving impact their physical quality of life and cause depression, psychological distress, guilt, loneliness, and restrictions on social activities.
Deviating from traditional unidimensional research on hospice caregivers, this study explored the transactional nature of reciprocal suffering by examining caregiver concerns through four dimensions: physical, psychological, social, and spiritual.
Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers.
Results indicated that of the 125 pain talk utterances, the majority referenced psychological concern (49%), followed by physical (28%), social (22%), and spiritual (2%). Reflections on concerns revealed a global perspective of caregiving, which highlighted the patient’s needs juxtaposed to the caregiver’s recognized limitations.
By examining the reciprocal nature of suffering for caregivers, this study reinforced the need for assessing caregivers in hospice care, with specific emphasis on the importance of providing caregiver education on pain management.
Caregiver; pain management; hospice; suffering; caregiver burden; caregiver quality of life
This paper discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures, and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.
Hospice; CPMQ; caregivers; interdisciplinary team; caregiver quality of life
Inclusion of patients and caregivers in decisions related to the delivery of care is inherent in the hospice philosophy. Telemedicine technologies offer a potential solution to the challenges presented by the geographic distance between team meetings and the home environment. While inclusion requires additional coordination by the hospice team, it also offers an important opportunity to improve communication between the team and the patient and family. A modified conceptual model based on two previous frameworks is outlined to support patient and family involvement in hospice team meetings. Further research is suggested to determine the structural feasibility of patient and family involvement via videophone as well as the structural and procedural changes resulting from this inclusion. Finally, clinical outcomes and family evaluation of the inclusion experience need to be thoroughly researched before final conclusions may be reached.
Hospice; Interdisciplinary Teams; Patient and Family Involvement
This article seeks to share the recruitment statistics and experiences for the Assessment of Caregivers for Team Intervention via Videophone Encounters home-based telehealth intervention pilot study. Challenges such as initial inclusion criteria, monitoring and tracking of recruitment statistics, and strategies are presented. Recruitment continues to be an important barrier to home-based telehealth research, and the sharing of recruitment statistics, challenges, and strategies can be beneficial.
The difficulty in recruiting subjects for home-based telehealth research is well documented. This article shares the recruitment statistics and experiences in the Assessment of Caregivers for Team Intervention via Videophone Encounters pilot study, a home-based telehealth intervention. The study obtained 83% of the desired sample. Challenges included issues with initial inclusion criteria, weather-related problems, timely referrals and follow-up, the enrollment process, the need for multiple visits, and unforeseen cases of multiple caregivers. Detailed monitoring and tracking of recruitment statistics and immediate response to overcome challenges were critical to the eventual recruitment success. Strategies included the reallocation of resources to add a second research site, adjustments in inclusion criteria, process improvement with the hospice admissions process, and strategies to address staff gate-keeping. Recruitment continues to be an important barrier to home-based telehealth research and the sharing of recruitment statistics, challenges, and strategies can be beneficial. Gathering of recruitment data is a critical component of pilot studies, which assists in the development of successful randomized clinical trials for future home-based telehealth research.
recruitment; hospice; palliative care; intervention research
Hospice and palliative care teams provide interdisciplinary care to seriously-ill and terminally-ill patients and their families. Care teams are comprised of medical and non-medical disciplines and include volunteers and lay workers in healthcare. The authors explored the perception of collaboration among hospice team members and actual collaborative communication practices in team meetings. The data set consisted of videotaped team meetings, some of which included caregiver participation, and team member completion of a survey. Findings revealed that the team’s reflection on process was most likely to occur in team meetings, however least likely to occur when caregivers were present. Although team members had a high perception of interdependence and flexibility of roles, this was less likely to be enacted in team meetings with and without the presence of caregivers. Caregiver participation in team meetings had a positive impact on collaborative communication and the potential benefit of caregiver inclusion in team meetings is explored.
end-of-life care; interdisciplinary collaboration; mixed methodology
This paper reports findings from a pilot study that enabled family caregivers to use videophone technology to participate in hospice interdisciplinary team meetings. The goal of the study was to ascertain which issues were important to caregivers and the hospice team. A qualitative content analysis of video-recorded team meetings between team members and caregivers was conducted. In a sample of 12 caregivers in 36 discussions, caregivers asked a total of 137 questions, with the majority as Yes/No questions (45.5%) mainly used to seek clarification (19.7%). Hospice staff asked 396 questions, with the majority of questions consisting of Yes/No questions (66.6%) mainly used to ask about the overall condition of the patient (17.2%). Data from this study suggest that when given the opportunity to participate in hospice team meetings caregivers will ask questions of hospice staff. Additionally, in light of prior research, this study’s findings suggest that caregivers may have questions that go unaddressed, specifically in regards to pain and medication.
caregivers; end-of-life care; communication
This paper presents the theoretical framework and rationale for the ACTive intervention which proposes the use of video technology to facilitate patient and family participation in hospice interdisciplinary team meetings where plans of care are determined. It is surmised that patient and family involvement will improve communication and compliance in hospice care. An analysis of data from a pilot project of the ACTive intervention was conducted to explore active participation among family caregivers and the hospice team. Through the use of videophone technology caregivers participated in video-recorded team meetings. The actual communication behaviors of caregivers and team members were analyzed for active participation. Findings revealed that team–prompted caregiver participation was most common, however, team use of supportive talk in this context was considerably less frequent. The study also found that the team’s use of active participation behaviors elicits caregiver active participation behaviors. The results of this study suggest the intervention was an effective way to involve family caregivers as active participants in the designing of care for their loved one. Findings also suggest that hospice staff would benefit from education and training on best practices for communicating with caregivers in the team meeting setting.
The purpose of this study was to observe the roles played by six hospice medical directors from two hospice programs during interdisciplinary team case reviews.
The study analyzed videotapes of case reviews in two hospice agencies over a two year period. The results indicate that the roles and levels of participation vary. Medical Directors were observed reviewing and assisting with care plans, acting as a liaison with primary physicians, educating staff, consulting with attending physicians, participating in quality assurance activities, and dealing with budget issues.
Medical Directors did not make home visits or assume the role of attending physician during the observation period.
The study demonstrates variance in roles among medical directors and raises new questions for future research.