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.

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.

Abstract

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.

Abstract

Objectives: To date, methodologies are lacking that address a holistic assessment of wellness in older adults. Technology applications may provide a platform for such an assessment, but have not been validated. We set out to demonstrate whether e-health applications could support the assessment of older adults' wellness in community-dwelling older adults. Materials and Methods: Twenty-seven residents of independent retirement community were followed over 8 weeks. Subjects engaged in the use of diverse technologies to assess cognitive performance, physiological and functional variables, as well as psychometric components of wellness. Data were integrated from various e-health sources into one study database. Correlations were assessed between different parameters, and hierarchical cluster analysis was used to explore the validity of the wellness model. Results: We found strong associations across multiple parameters of wellness within the conceptual model, including cognitive, functional, and physical. However, spirituality did not correlate with any other parameter studied in contrast to prior studies of older adults. Participants expressed overall positive attitudes toward the e-health tools and the holistic approach to the assessment of wellness, without expressing any privacy concerns. Conclusions: Parameters were highly correlated across multiple domains of wellness. Important clusters were noted to be formed across cognitive and physiological domains, giving further evidence of need for an integrated approach to the assessment of wellness. This finding warrants further replication in larger and more diverse samples of older adults to standardize and deploy these technologies across population groups.

Objectives

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.

Data sources

Published articles, web resources, clinical practice and ongoing research initiatives.

Conclusion

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.

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.

Objectives

This project is aimed at determining the feasibility and effect of using videoconferencing to deliver cancer-related pain management education and case consultation to health care providers in rural AI/AN communities.

Methods

The project provided four educational sessions and nine case conferences to health care providers at tribal clinics in Washington State and Alaska using videoconferencing with pain experts at the University of Washington. A cross-sectional, descriptive study design was used to survey the participating providers. Measures included satisfaction with the telehealth system and self-perceived competence in pain management.

Results

Fifty-two providers from 11 sites attended the educational sessions. Ninety-three providers from 16 sites participated in the case conferences. Case conference participants scored significantly higher on perceived competence in treating pain compared with clinic providers who did not attend. Educational session participants and case conference participants both reported a high level of satisfaction with videoconferencing.

Conclusions

Telehealth is a feasible and effective way to deliver cancer-related pain management education and increase competence among rural health care providers.

Summary

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.

Context

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.

Objectives

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.

Methods

Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers.

Results

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.

Conclusion

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.

Abstract

Objective: We aimed to develop a telehealth network to deliver postdiagnosis cancer care clinical services and education to American Indian and Alaska Native patients, their families, and their healthcare providers. We also sought to identify the challenges and opportunities of implementing such a telehealth-based application for this rural and underserved population. Materials and Methods: We followed a participatory formative evaluation approach to engage all stakeholders in the telehealth network design and implementation. This approach allowed us to identify and address technical and infrastructure barriers, lack of previous experience with telehealth, and political, legal, and historical challenges. Results: Between September 2006 and August 2009, nine tribal clinics in Washington and 26 clinical sites in Alaska had participated in the telehealth network activities. Network programming included cancer education presentations, case conferences, and cancer survivor support groups. Twenty-seven cancer education presentations were held, with a total provider attendance of 369. Forty-four case conferences were held, with a total of 129 cases discussed. In total, 513 patient encounters took place. Keys to success included gaining provider and community acceptance, working closely with respected tribal members, understanding tribal sovereignty and governance, and working in partnership with cultural liaisons. Conclusion: The telehealth network exceeded expectations in terms of the number of participating sites and the number of patients served. Following a participatory formative evaluation approach contributed to the success of this telehealth network and demonstrated the importance of community involvement in all stages of telehealth system design and implementation.

Healthcare providers serving rural populations face numerous barriers to accessing educational programming. Difficulties accessing continuing professional education contribute to the challenges of providing comprehensive health care in the rural setting. Telehealth can inform and educate rural providers about changes in medicine and evidence-based practices, both of which may help them provide quality care. The Native People for Cancer Control Telehealth Network used telehealth technology to deliver a cancer education series in 2008 and 2009 to Washington and Alaska rural healthcare providers who treated American Indians and Alaska Native people. Customizing presentation content to providers’ educational needs encouraged attendance. Evaluation indicated videoconferencing technology was positive received for delivery of the educational sessions. This series demonstrated videoconferencing was a satisfactory means of delivering real-time, interactive cancer educational programming to providers who might not otherwise have access to such programs.

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.

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.

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.

Abstract

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.

Abstract

The Problem Solving Intervention (PSI) is a structured, cognitive–behavioral intervention that provides people with problem-solving coping skills to help them face major negative life events and daily challenges. PSI has been applied to numerous settings but remains largely unexplored in the hospice setting. The aim of this pilot study was to demonstrate the feasibility of PSI targeting informal caregivers of hospice patients. We enrolled hospice caregivers who were receiving outpatient services from two hospice agencies. The intervention included three visits by a research team member. The agenda for each visit was informed by the problem-solving theoretical framework and was customized based on the most pressing problems identified by the caregivers. We enrolled 29 caregivers. Patient's pain was the most frequently identified problem. On average, caregivers reported a higher quality of life and lower level of anxiety postintervention than at baseline. An examination of the caregiver reaction assessment showed an increase of positive esteem average and a decrease of the average value of lack of family support, impact on finances, impact on schedules, and on health. After completing the intervention, caregivers reported lower levels of anxiety, improved problem solving skills, and a reduced negative impact of caregiving. Furthermore, caregivers reported high levels of satisfaction with the intervention, perceiving it as a platform to articulate their challenges and develop a plan to address them. Findings demonstrate the value of problem solving as a psycho-educational intervention in the hospice setting and call for further research in this area.

This case study compared the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone. This study demonstrates the feasibility of using telehealth tools to deliver interventions in hospice and identified ways or protocols that can be adapted for telehealth delivery. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication. The results have laid the framework for further implementation of an ongoing, randomized clinical trial examining the use of telehealth tools for delivery of psychoeducational interventions with hospice caregivers.

A comparative case study comparing the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone, was conducted. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication.

Abstract

This case study compared the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone. This study demonstrates the feasibility of using telehealth tools to deliver interventions in hospice and identified ways or protocols that can be adapted for telehealth delivery. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication. The results have laid the framework for further implementation of an ongoing, randomized clinical trial examining the use of telehealth tools for delivery of psychoeducational interventions with hospice caregivers.

This paper describes the theoretical foundation, development, and content of a Web-based educational intervention to improve cross-cultural communication about end-of-life concerns and reports on the preliminary evaluation of this intervention using a qualitative study design. The data were collected with non-structured questions in a convenience sample of 21 hospice providers. Participants reported that they found the training appropriate and useful. Participants also reported finding the online delivery convenient and the interactive format valuable. Improving the quality of cross-cultural patient–provider communication can contribute to reducing disparities at end-of-life.

The Aging in Place Project at the University of Missouri (MU) required legislation in 1999 and 2001 to be fully realized. An innovative home health agency was initiated by the Sinclair School of Nursing specifically to help older adults age in place in the environment of their choice. In 2004, an innovative independent living environment was built and is operated by a private long term care company, as a special facility where residents can truly age in place and never fear being moved to a traditional nursing home unless they choose to do so. With care provided by the home care agency with registered nurse care coordination services, residents receive preventative and early illness recognition assistance that have markedly improved their lives. Evaluation of aging in place reveal registered nurse care coordination improves outcomes of cognition, depression, activities of daily living, incontinence, pain, and shortness of breath as well as delaying or preventing nursing home placement. Links with MU students, faculty, and nearly every school or college on campus enrich the lives of the students and residents of the housing environment. Research projects are encouraged and residents who choose to participate are enjoying helping with developing cutting technology to help other seniors age in place.

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.

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.

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.