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1.  Exploring the Collective Hospice Caregiving Experience 
Journal of Palliative Medicine  2014;17(1):50-55.
Abstract
Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.
Objective: The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time.
Design: A mixed model analysis was used.
Setting/subjects: Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification.
Measurements: Measured were caregiver quality of life, social support, anxiety, and depression.
Results: Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety.
Conclusions: Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.
doi:10.1089/jpm.2013.0289
PMCID: PMC3887433  PMID: 24351126
3.  Hospice Caregivers’ Experiences With Pain Management: “I’m Not a Doctor, and I Don’t Know If I Helped Her Go Faster or Slower” 
Journal of pain and symptom management  2013;46(6):10.1016/j.jpainsymman.2013.02.011.
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
Semi-structured 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 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 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.
doi:10.1016/j.jpainsymman.2013.02.011
PMCID: PMC3795892  PMID: 23731855
hospice; caregivers; pain
4.  Patient Safety Incidents in Hospice Care: Observations from Interdisciplinary Case Conferences 
Journal of Palliative Medicine  2013;16(12):1561-1567.
Background: In the home hospice environment, issues arise every day presenting challenges to the safety, care, and quality of the dying experience. The literature pertaining to the safety challenges in this environment is limited.
Aim: The study explored two research questions; 1) What types of patient safety incidents occur in the home hospice setting? 2) How many of these incidents are recognized by the hospice staff and/or the patient or caregiver as a patient safety incident?
Design and Methods: Video-recordings of hospice interdisciplinary team case conferences were reviewed and coded for patient safety incidents. Patient safety incidents were defined as any event or circumstance that could have resulted or did result in unnecessary harm to the patient or caregiver, or that could have resulted or did result in a negative impact on the quality of the dying experience for the patient. Codes for categories of patient safety incidents were based on the International Classification for Patient Safety.
Setting/Participants: The setting for the study included two rural hospice programs in one Midwestern state in the United States. One hospice team had two separately functioning teams, the second hospice had three teams.
Results: 54 video-recordings were reviewed and coded. Patient safety incidents were identified that involved issues in clinical process, medications, falls, family or caregiving, procedural problems, documentation, psychosocial issues, administrative challenges and accidents.
Conclusion: This study distinguishes categories of patient safety events that occur in home hospice care. Although the scope and definition of potential patient safety incidents in hospice is unique, the events observed in this study are similar to those observed with in other settings. This study identifies an operating definition and a potential classification for further research on patient safety incidents in hospice. Further research and consensus building of the definition of patient safety incidents and patient safety incidents in this setting is recommended.
doi:10.1089/jpm.2013.0104
PMCID: PMC3868266  PMID: 24160741
5.  Exploring Oral Literacy in Communication with Hospice Caregivers 
Journal of pain and symptom management  2013;46(5):10.1016/j.jpainsymman.2012.11.006.
Context
Low oral literacy has been identified as a barrier to pain management for informal caregivers who receive verbal instruction on pain medication and pain protocols.
Objectives
To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences.
Methods
Using transcripts of interactions (n=47), oral literacy features were analyzed by examining generalized language complexity using the Flesch-Kincaid grading scale and dialogue interactivity defined by talking turns and interaction time. Means for longitudinal follow-up measures on caregiver anxiety, quality of life, perception of pain management, knowledge and comfort providing pain medication, and satisfaction were examined to explore their relationship to oral literacy.
Results
Communication between team members and caregivers averaged a fourth grade level on the Flesch-Kincaid scale, indicating that communication was easy to understand. Reading ease was associated (r=.67, p<.05) with caregiver understanding of and comfort with pain management. Perceived barriers to caregiver pain management were lower when sessions had increased use of passive sentences (r=.61, p<.01), suggesting that passive voice was not an accurate indicator of language complexity. Caregiver understanding and comfort with administering pain medications (r=−.82, p<.01) and caregiver quality of life (r=−.49, p<.05) were negatively correlated with dialogue pace.
Conclusion
As the grade level of talk with caregivers and hospice teams increased, associated caregiver anxiety increased. Caregivers with higher anxiety also experienced greater difficulty in understanding pain medication and its management. Specific adjustments that hospice teams can make to improve caregiver experiences are identified.
doi:10.1016/j.jpainsymman.2012.11.006
PMCID: PMC3695037  PMID: 23522518
caregivers; pain management; hospice team; health literacy
6.  Perspectives on Wellness Self-Monitoring Tools for Older Adults 
International journal of medical informatics  2013;82(11):10.1016/j.ijmedinf.2013.08.009.
Purpose
Our purpose was to understand different stakeholder perceptions about the use of self-monitoring tools, specifically in the area of older adults’ personal wellness. In conjunction with the advent of personal health records, tracking personal health using self-monitoring technologies shows promising patient support opportunities. While clinicians’ tools for monitoring of older adults have been explored, we know little about how older adults may self-monitor their wellness and health and how their health care providers would perceive such use.
Methods
We conducted three focus groups with health care providers (n=10) and four focus groups with community-dwelling older adults (n=31).
Results
Older adult participants’ found the concept of self-monitoring unfamiliar and this influenced a narrowed interest in the use of wellness self-monitoring tools. On the other hand, health care provider participants showed open attitudes towards wellness monitoring tools for older adults and brainstormed about various stakeholders’ use cases. The two participant groups showed diverging perceptions in terms of: perceived uses, stakeholder interests, information ownership and control, and sharing of wellness monitoring tools.
Conclusions
Our paper provides implications and solutions for how older adults’ wellness self-monitoring tools can enhance patient-health care provider interaction, patient education, and improvement in overall wellness.
doi:10.1016/j.ijmedinf.2013.08.009
PMCID: PMC3874863  PMID: 24041452
Consumer Health Information; Health Communication; Self Management; Independent Living
7.  Hospice caregiver depression: The evidence surrounding the greatest pain of all 
Journal of social work in end-of-life & palliative care  2013;9(4):10.1080/15524256.2013.846891.
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.
doi:10.1080/15524256.2013.846891
PMCID: PMC3849709  PMID: 24295096
hospice; caregiving; depression
8.  Older Adults and Mobile Phones for Health: A Review 
Journal of biomedical informatics  2013;46(5):10.1016/j.jbi.2013.06.008.
doi:10.1016/j.jbi.2013.06.008
PMCID: PMC3836587  PMID: 23810858
9.  Using Medical Words with Family Caregivers 
Journal of Palliative Medicine  2013;16(9):1135-1139.
Abstract
Background
Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.
Objective
This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.
Design
Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word placement (statement or question), whether or not the word was explained, and the caregiver's response to the word.
Setting/subjects
As part of an ongoing randomized clinical trial in the midwestern United States, informal hospice caregivers participated in recorded hospice care planning discussions.
Measures
A selection of videorecorded interactions from an ongoing study was analyzed.
Results
Hospice team members used six times as many medical words compared to caregivers. The majority of medical words used by caregivers and team members were drug names. Medical words were predominantly used as statements rather than questions that sought clarification. Three-fourths of medical words used by team members were not explained to caregivers. Caregivers provided little response to medical word use, indicating a lack of understanding.
Conclusions
The propensity to use medical words during clinical communication with family caregivers is cautioned. In order to recognize the caregiver as a contributing team member, clinicians should limit the use of medical words, provide lay explanation alongside medical terminology, and use questions to check for understanding. More research is needed to determine assessment tools to capture the caregiver's level of understanding of medication and pain management protocol.
doi:10.1089/jpm.2013.0041
PMCID: PMC3776621  PMID: 23937064
10.  Older Adults’ Satisfaction with a Medication Dispensing Device in Home Care 
Introduction
Older adults with multiple chronic conditions face the complex task of medication management involving multiple medications of varying doses at different times. Advances in telehealth technologies have resulted in home-based devices for medication management and health monitoring of older adults. We examined older adults’ perceptions of a telehealth medication dispensing device as part of a clinical trial involving home health care clients, nurse coordination and use of the medication dispensing device.
Methods
Ninety-six frail older adult participants who used the medication dispensing device for 12 months completed a satisfaction survey related to perceived usefulness and reliability. Results were analyzed and grouped by themes in the following areas: Ease of Use, Reliability, Medication Management Assistance, Routine Task Performance and Acceptability.
Results
Nearly all participants perceived the medication dispensing device as very easy to use, very reliable and helpful in management of their medications. Eighty-four percent of participants expressed a desire to use the machine in the future.
Conclusion
The technology-enhanced medication management device in this study is an acceptable tool for older adults to manage medication in collaboration with home care nurses. Improved usability and cost models for medication dispensers are areas for future research.
Trial Registration
clinicaltrials.gov identifier: NCT01321853
doi:10.3109/17538157.2012.741084
PMCID: PMC4122419  PMID: 23323721
medication management; medication dispenser; older adults; telehealth; evaluation
11.  Testing a Theory-Based Mobility Monitoring Protocol Using In-Home Sensors: A Feasibility Study 
Mobility is a key factor in the performance of many everyday tasks required for independent living as a person grows older. The purpose of this mixed methods study was to test a theory-based mobility monitoring protocol by comparing sensor-based measures to self-report measures of mobility and assessing the acceptability of in-home sensors with older adults. Standardized instruments to measure physical, psychosocial and cognitive parameters were administered to 8 community-dwelling older adults at baseline, 3 month and 6 month visits (examples: FES, GDS-SF, Mini-cog). Semi-structured interviews to characterize acceptability of the technology were conducted at 3 month and 6 month visits. Technical issues prevented comparison of sensor-based measures with self-report measures. In-home sensor technology for monitoring mobility is acceptable to older adults. Implementing our theory-based mobility monitoring protocol in a field study in the homes of older adults is a feasible undertaking but requires more robust technology for sensor-based measure validation.
doi:10.3928/19404921-20130729-02
PMCID: PMC4099136  PMID: 23938159
12.  Using Commercially available Tools for multi-faceted health assessment: Data Integration Lessons Learned 
Health monitoring data collected from multiple available intake devices provide a rich resource to support older adult health and wellness. Though large amounts of data can be collected, there is currently a lack of understanding on integration of these various data sources using commercially available products. This article describes an inexpensive approach to integrating data from multiple sources from a recently completed pilot project that assessed older adult wellness, and demonstrates challenges and benefits in pursuing data integration using commercially available products. The data in this project were sourced from a) electronically captured participant intake surveys, and existing commercial software output for b) vital signs and c) cognitive function. All the software used for data integration in this project was freeware and was chosen because of its ease of comprehension by novice database users. The methods and results of this approach provide a model for researchers with similar data integration needs to easily replicate this effort at a low cost.
doi:10.1097/NXN.0b013e318295e58f
PMCID: PMC3723774  PMID: 23728444
Informatics; Health promotion; Aging
13.  Framing the evidence for health smart homes and home-based consumer health technologies as a public health intervention for independent aging: a systematic review 
Introduction
There is a critical need for public health interventions to support the independence of older adults as the world’s population ages. Health smart homes (HSH) and home-based consumer health (HCH) technologies may play a role in these interventions.
Methods
We conducted a systematic review of HSH and HCH literature from indexed repositories for health care and technology disciplines (e.g., MEDLINE, CINAHL, and IEEE Xplore) and classified included studies according to an evidence-based public health (EBPH) typology.
Results
One thousand, six hundred and thirty nine candidate articles were identified. Thirty-one studies from the years 1998–2011 were included. Twenty-one included studies were classified as emerging, 10 as promising and 3 as effective (first tier).
Conclusion
The majority of included studies were published in the period beginning in the year 2005. All 3 effective (first tier) studies and 9 of 10 of promising studies were published during this period. Almost all studies included an activity sensing component and most of these used passive infrared motion sensors. The three effective (first tier) studies all used a multicomponent technology approach that included activity sensing, reminders and other technologies tailored to individual preferences. Future research should explore the use of technology for self-management of health by older adults, social support and self-reported health measures incorporated into personal health records, electronic medical records, and community health registries.
doi:10.1016/j.ijmedinf.2013.03.007
PMCID: PMC3740158  PMID: 23639263
Health Smart Homes; Evidence-Based Public Health; Aging in Place; Independent Aging; STARE-HI
14.  Informal hospice caregiver pain management concerns: A qualitative study 
Palliative medicine  2013;27(7):673-682.
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.
doi:10.1177/0269216313483660
PMCID: PMC3950803  PMID: 23612959
Caregivers; hospice care; pain; pain management; palliative care; end-of-life
15.  Trust in Health Information Sources Differs Between Young/Middle and Oldest Old 
Purpose
Examine differences in trust of health information sources between the oldest old and young/middle old.
Design
Cross-sectional survey using convenience sampling.
Setting
Eleven retirement communities.
Subjects
Older adults ≥65 years (N = 353).
Measures
Self-rated trust in health information sources.
Analysis
Mann-Whitney U-test or Fisher exact test to compare trust between age groups; multinomial ordered logistic regression analyses to model trust in Internet information sources.
Results
The overall survey response rate was 26.6%. Differences in trust were identified between oldest old (n = 108) and young/middle old (n = 245) for pharmacist (p < .05), Internet (p < .001), television (p < .05), radio (p < .001), and newspaper (p < .05) sources. In the oldest old, we found associations between levels of trust in Internet sources and frequency of Internet use (β = 4.13, p < .001).
Conclusion
Understanding where differences in trust arise can inform the design of resources to support the information-seeking process. When planning widespread distribution of health information to these distinct groups, program developers need to consider these differences.
doi:10.4278/ajhp.120921-ARB-459
PMCID: PMC4061972  PMID: 23941098
Aged; Information Seeking Behavior; Health Promotion; Prevention Research; Manuscript format: research; Research purpose: descriptive, instrument development; Study design: nonexperimental; Outcome measure: cognitive, behavioral; Setting: local community, clinical health care; Health focus: intellectual health, medical self-care, social health; Strategy: education, culture change, behavior change; Target population: seniors; Target population circumstances: education/income level, race/ethnicity
16.  Using informatics to capture older adults’ wellness 
Purpose
The aim of this paper is to demonstrate how informatics applications can support the assessment and visualization of older adults’ wellness. A theoretical framework is presented that informs the design of a technology enhanced screening platform for wellness. We highlight an ongoing pilot demonstration in an assisted living facility where a community room has been converted into a living laboratory for the use of diverse technologies (including a telehealth component to capture vital signs and customized questionnaires, a gait analysis component and cognitive assessment software) to assess the multiple aspects of wellness of older adults.
Methods
A demonstration project was introduced in an independent retirement community to validate our theoretical framework of informatics and wellness assessment for older adults. Subjects are being recruited to attend a community room and engage in the use of diverse technologies to assess cognitive performance, physiological and gait variables as well as psychometrics pertaining to social and spiritual components of wellness for a period of eight weeks. Data are integrated from various sources into one study database and different visualization approaches are pursued to efficiently display potential correlations between different parameters and capture overall trends of wellness.
Results
Preliminary findings indicate that older adults are willing to participate in technology-enhanced interventions and embrace different information technology applications given appropriate and customized training and hardware and software features that address potential functional limitations and inexperience with computers.
Conclusion
Informatics can advance health care for older adults and support a holistic assessment of older adults’ wellness. The described framework can support decision making, link formal and informal caregiving networks and identify early trends and patterns that if addressed could reduce adverse health events.
doi:10.1016/j.ijmedinf.2011.03.004
PMCID: PMC4061974  PMID: 21482182
Health promotion; Aging; Informatics; Wellness; Function
17.  Participatory Design of an Integrated Information System Design to Support Public Health Nurses and Nurse Managers 
Objectives
The objectives of the study were to use persona-driven and scenario-based design methods to create a conceptual information system design to support public health nursing.
Design and Sample
We enrolled 19 participants from two local health departments to conduct an information needs assessment, create a conceptual design, and conduct a preliminary design validation.
Measures
Interviews and thematic analysis were used to characterize information needs and solicit design recommendations from participants. Personas were constructed from participant background information, and scenario-based design was used to create a conceptual information system design. Two focus groups were conducted as a first iteration validation of information needs, personas, and scenarios.
Results
Eighty-nine information needs were identified. Two personas and 89 scenarios were created. Public health nurses and nurse managers confirmed the accuracy of information needs, personas, scenarios, and the perceived usefulness of proposed features of the conceptual design. Design artifacts were modified based on focus group results.
Conclusion
Persona-driven design and scenario-based design are feasible methods to design for common work activities in different local health departments. Public health nurses and nurse managers should be engaged in the design of systems that support their work.
doi:10.1111/phn.12081
PMCID: PMC4061981  PMID: 24117760
design reuse; information systems; public health informatics; public health nursing; public health systems; scenario-based design
18.  Older adults’ acceptance of a community-based telehealth wellness system 
The development of ongoing assessment tools to monitor older adult health and wellness can support improved quality of life and independence. These technologies have often been employed within private residences. Our work describes a telehealth kiosk system implemented within a community setting, which reduces the costs of installing and maintaining individual systems. Though user acceptance of telehealth systems has been studied within the context of home residences, this has yet to be addressed for community-based systems. Older adults in a retirement community were recruited to use a telehealth system including assessment of vital signs and cognitive performance. With a series of focus groups (N = 12, average age 79.3 years), we examined user perceptions of the telehealth kiosk, addressing issues of usability, effectiveness and privacy. Older adults were favorable towards the collection of health monitoring information, recognizing the utility of these data sources. There were issues of usability, especially regarding ergonomics of the telehealth kiosk. We found no concerns over privacy, with some participants expressing increased preference for the social interactions afforded through the community setting. Understanding the social, technical and human factors involved with a community-based telehealth system can inform the design of cost-effective health monitoring systems.
doi:10.3109/17538157.2011.647938
PMCID: PMC4062541  PMID: 22571733
Telehealth; older adults; wellness; community health
19.  Examining Health Information–Seeking Behaviors of Older Adults 
This study aims to examine which resources older adults utilize for their health information needs, how trustworthy and reliable they find these resources, and the difficulties they face in obtaining health-related information. A 41-item survey designed to understand the information-seeking characteristics of older adults was developed and distributed to retirement communities. Some items were taken from the Health Information National Trends Survey. Of 1520 surveys, 403 were returned completed (26.6%). Respondents’ mean age was 77.65 years. Average scores indicated respondents trusted particular sources of health information in the following order (highest to lowest): health care providers, pharmacists, friends and relatives, retirement community staff, newspapers, the Internet, television, and the radio. In conclusion, older adults have a greater amount of trust in a person with whom they are able to actively discuss their health as opposed to a nonliving source, which they have to access or manipulate, such as the Internet. Efforts must be made to help older adults better navigate and utilize the Internet and recognize dependable online sources so that they may increase their trust in its use, thereby increasing satisfaction with their own ability to seek and use sources of health information.
doi:10.1097/01.NCN.0000432131.92020.42
PMCID: PMC4062544  PMID: 23974574
Health Information National Trends Survey; Health information-seeking behavior; Krantz Health Opinion Survey; Survey
20.  Telehealth Group Interactions in the Hospice Setting: Assessing Technical Quality Across Platforms 
Telemedicine Journal and e-Health  2013;19(4):235-240.
Abstract
Objective: This study aims to examine the technical quality of videoconferencing used in hospice to engage caregivers as “virtual” members of interdisciplinary team meetings and their impressions of telehealth. Furthermore, it aims to compare the quality of plain old telephone service (POTS) and Web-based videoconferencing and provide recommendations for assessing video quality for telehealth group interactions. Materials and Methods: Data were obtained from an ongoing randomized clinical trial exploring Web-based videoconferencing and a completed prospective study of POTS-based videoconferencing in hospice. For the assessment of the technical quality, an observation form was used. Exit interviews with caregivers assessed impressions with the use of telehealth. A retrospective analysis of video-recorded team meetings was conducted rating attributes essential for the quality of videoconferencing (e.g., video artifacts, sharpness). Results: In total, 200 hospice team meetings were analyzed, including 114 video-recorded team meetings using Web-based videoconferencing and 86 meetings using POTS videophones. A direct comparison between the two modalities indicates the superiority of Web-based video in image quality but less so in audio quality. Transcripts of 19 caregiver interviews were analyzed. Caregivers found the use of videoconferencing to be a positive experience and a useful and essential tool to communicating with the hospice team. Conclusions: This study highlights the potential of telehealth to improve communication in hospice and the need for new tools that capture the quality of video-mediated communication among multiple stakeholders and strategies to improve the ongoing documentation of telehealth group sessions' technical quality.
doi:10.1089/tmj.2012.0185
PMCID: PMC3621258  PMID: 23506328
telecommunications; e-health; telehealth
21.  Conducting the ACTIVE Randomized Trial in Hospice Care: Keys to Success 
Clinical trials (London, England)  2012;10(1):10.1177/1740774512461858.
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 two 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 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.
Results
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.
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.
doi:10.1177/1740774512461858
PMCID: PMC3554844  PMID: 23104974
hospice; randomized trial; pain management; videoconference; caregivers; interdisciplinary teams
22.  Family caregiver participation in hospice interdisciplinary team meetings: How does it affect the nature and content of communication? 
Health communication  2012;28(2):110-118.
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.
doi:10.1080/10410236.2011.652935
PMCID: PMC3382048  PMID: 22435889
23.  Application of the VALUE Communication Principles in ACTIVE Hospice Team Meetings 
Journal of Palliative Medicine  2013;16(1):60-66.
Abstract
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1089/jpm.2012.0229
PMCID: PMC3546416  PMID: 23036014
24.  Integrating Telehealth Care-Generated Data With the Family Practice Electronic Medical Record: Qualitative Exploration of the Views of Primary Care Staff 
Background
Telehealth care is increasingly being employed in the management of long-term illness. Current systems are largely managed via “stand-alone” websites, which require additional log-ons for clinicians to view their patients’ symptom records and physiological measurements leading to frustrating delays and sometimes failure to engage with the record. However, there are challenges to the full integration of patient-acquired data into family physicians’ electronic medical records (EMR) in terms of reliability, how such data can best be summarized and presented to avoid overload to the clinicians, and how clarity of responsibility is managed when multiple agencies are involved.
Objective
We aimed to explore the views of primary care clinicians on the acceptability, clinical utility, and, in particular, the benefits and risks of integrating patient-generated telehealth care data into the family practice EMR and to explore how these data should be summarized and presented in order to facilitate use in routine care.
Methods
In our qualitative study, we carried out semi-structured interviews with clinicians with experience of and naïve to telehealth care following demonstration of pilot software, which illustrated various methods by which data could be incorporated into the EMR.
Results
We interviewed 20 clinicians and found 2 overarching themes of “workload” and “safety”. Although clinicians were largely positive about integrating telehealth care data into the EMR, they were concerned about the potential increased workload and safety issues, particularly in respect to error due to data overload. They suggested these issues could be mitigated by good system design that summarized and presented data such that they facilitated seamless integration with clinicians’ current routine processes for managing data flows, and ensured clear lines of communication and responsibility between multiple professionals involved in patients’ care.
Conclusions
Family physicians and their teams are likely to be receptive to and see the benefits of integrating telehealth-generated data into the EMR. Our study identified some of the key challenges that must be overcome to facilitate integration of telehealth care data. This work particularly underlines the importance of actively engaging with clinicians to ensure that systems are designed that align well with existing practice data-flow management systems and facilitate safe multiprofessional patient care.
doi:10.2196/ijmr.2820
PMCID: PMC3869047  PMID: 24280631
telehealth care; family practice; data management
25.  Targeting communication interventions to decrease oncology family caregiver burden 
Seminars in oncology nursing  2012;28(4):262-270.
Objectives
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.
Data Sources
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.
Conclusion
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.
doi:10.1016/j.soncn.2012.09.009
PMCID: PMC3489276  PMID: 23107184

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