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.
This study utilized participant feedback to qualitatively evaluate an intervention (ACTIVE) that utilized 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. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE 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 realize their goal of maximum patient and family participation in care planning.
hospice care; telemedicine; patient care team; family; patients; caregivers
In health care teams, lack of collaboration or inability to collaborate undermines the goal of providing holistic and comprehensive geriatric care. This study examines relational communication control used by hospice interdisciplinary team members in their attempt to share information and contribute to decision making in team meetings. Eighty-one hospice team discussions were coded for message control types. Analysis of the data found that the nurse’s role as primary reporter implicitly created a struggle for relational control among other team members within the meeting. This study concluded that a majority of interpersonal communication in the team meetings was aimed at gaining control of the information exchange. Future attention should be given to organizational policy aimed at shaping the structure of team meetings.
This article reports on an exploratory study of hospice social workers’ assessment and collaborative practices related to pain management; especially caregiver concerns about patient pain. A non-randomized national survey indicated that social workers assess the components of pain but are not able to devote as much attention to it as they feel is needed. While most reported assessing patient and family needs, many do not use standardized assessment instruments. These data suggested that while social workers may understand their role in pain management they struggled for the time and tools needed to help address caregiver concerns related to pain management. This study suggests that the development of standardized assessment instruments for hospice social workers would be helpful and points to the value of team training and discussion about ways the social worker can best assist caregivers with pain management issues. Research is needed on social work interventions with caregivers related to pain to establish an evidence base for hospice social work, cement a role identity for social work in pain management, and facilitate increased interdisciplinary collaboration to improve the team response to all aspects of pain.
Social Work; hospice; interdisciplinary team; pain management; assessment
Backstage communication has been shown to play a vital role in a bona fide group’s teamwork. Hospice interdisciplinary teams are considered bona fide groups, and hospice interdisciplinary team meetings constitute backstage communication because they occur away from patients and families. Video recordings of interdisciplinary team meetings were systematically coded for backstage communication mess ages and the extent to which different interdisciplinary team members participated in backstage communication was explored. Results revealed that predominant backstage communication messages included offering of impressions and formal reporting. The sharing of backstage messages in interdisciplinary team meetings enable hospice staff to manage emotions in the safety of the backstage as well as prepare for frontstage professionalism.
Bona fide groups; hospice; backstage communication
The aim of this study was to explore the information flow of hospice interdisciplinary meetings focusing on information access, exchange and documentation. The study participants were members of four hospice interdisciplinary teams in the Midwestern United States. Team members included a diverse range of professionals including physicians, nurses, social workers, bereavement counselors, and others. A total of 81 patient care discussions were videotaped and transcribed. A content analysis revealed several themes that needed to be addressed to improve the overall information flow, such as access to and recording of information, documentation of services, obtaining information from absent team members, data redundancy and updating of recorded information. On average, 5% of all utterances when discussing a patient case were focused on soliciting information from the member who had access to the patient chart. In 12.3% of all discussions, members referred to an absent member who could have provided additional information. In 8.6% of all discussions the same facts were repeated three times or more. Based on the findings we propose guidelines that can address potential informational gaps and enhance team communication in hospice.
Hospice; interdisciplinary team; communication; information flow
As patients are cared for in their home by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice’s reputation as the gold standard for terminal care, there is still a need to improve pain management practices including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver/patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire (CPMQ). Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the CPMQ by the research team, there was only one discussion of caregiver pain related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.
Caregiver Pain Medicine Questionnaire (CPMQ); hospice; pain management; interdisciplinary teams
Hospice agencies are required to schedule and conduct Interdisciplinary Team meetings; however, little guidance exists as to how these meetings should be conducted. The purpose of this study was to apply the Time, Interaction and Performance theory to gain a better understanding of Interdisciplinary Team meetings. A total of 81 patient care discussions on 24 patients by four interdisciplinary hospice teams were videotaped in the time frame from December 2006 to April 2007 and transcribed. A total of 1,982 utterances were recorded. The utterances were analyzed using thematic content analysis. Nurses had the most utterances in relation to team production, defining patient needs and meeting defined goals. Additionally, nurses had the most utterances in relation to scheduling and synchronization of activities. Two specific areas in need of enhancement were noted, improvement in team member support and communication effectiveness. Future interventions targeting these areas of need may increase coordination of services which results in patient and family satisfaction and reduced overall health care costs.
Involving caregivers in hospice interdisciplinary team (IDT) meetings has been offered as a potential solution to caregivers' unmet communication needs. This case study details one caregiver's participation in her mother's hospice interdisciplinary team care planning meetings, both in person and via videophone technology. This preliminary case is offered as part of a larger National Cancer Institute sponsored study investigating involvement of caregivers in team meetings using videophone technology. This analysis highlights communication differences between the two mediums as well as measures caregiver outcomes. Findings noted differences in team leadership and verbal validation and remediation between the two mediums. Caregiver outcomes revealed potential benefits of their involvement in team meetings. Caregiver-team communication issues are noted including the need for standardized caregiver assessment and team education and training.
caregiver; interdisciplinary team; videophone technology; communication