Cancer caregivers have information and support needs, especially about cancer pain management. With high Internet use reported among caregivers, YouTube may be an accessible option when looking for information on cancer pain management.
The purpose of this study was to explore the availability and characteristics of instructional cancer pain management videos on YouTube and determine to what extent these videos addressed the role of informal caregivers in cancer pain management.
A systematic review of videos on YouTube resulting from search terms “pain and cancer,” “pain and hospice,” and “pain and palliative care” was conducted in May 2013. If the video addressed pain management, was in English, and was instructional, it was coded for the scope and design of instructional content that included caregivers.
The search terms yielded 1118 unique videos and 43 videos met the inclusion criteria. Overall, 63% of videos were viewed 500 times or less and half of the videos received “like” ratings by viewers. Video instruction was primarily talk without any onscreen action (65%), user-generated amateur video (79%), and had poor quality sources of information. Videos were mainly clinician-centered (77%). Although the majority of videos addressed the need for caregiver pain assessment (35%) and caregiver education (23%), few actually addressed specific caregiver pain management barriers.
The majority of videos were primarily directed toward a clinical audience. Future research is necessary to determine if the platform is feasible and beneficial as a support tool for oncology caregivers.
instructional films and videos; caregivers; pain management; cancer
Hospice family caregivers experience significantly higher rates of psychological distress than demographically similar noncaregivers. Interventions based on cognitive–behavioral therapy have been shown to reduce psychological distress in the general population by providing tools to modify thinking patterns that directly affect emotions and behavior. Such interventions might reasonably be incorporated into hospice social work; however, numerous contextual factors must be taken into account to ensure that any interventions are appropriate to the unique needs of clients. The purpose of the study discussed in this article was to contextualize one aspect of the cognitive–behavioral model based on firsthand accounts of hospice family caregivers. Following a modified grounded theory approach, researchers engaged in a secondary analysis of data from a larger study provided in a subsample of 90 audio-recorded conversations between hospice family caregivers and interventionists. Findings indicated that distressed caregivers engaged in five dominant thinking patterns: (1) “should” statements, (2) catastrophizing or minimizing, (3) personalizing, (4) absolute thinking, and (5) making assumptions. Implementing cognitive–behavioral therapies based on identified caregiver thinking patterns will allow hospice social workers to empower caregivers to cope more effectively with the numerous stressors they encounter while caring for a dying loved one.
caregivers; cognitive–behavioral therapy; hospices; palliative care
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.
hospice; caregivers; ACTIVE; evaluation; team; interdisciplinary
The goal of this study was to explore aging-related stress among older spousal caregivers providing hospice care for an older adult with cancer. Cases were selected from an ongoing randomized controlled trial that involved audiorecorded visits with caregivers over four different time points. Recordings consisted of caregivers discussing caregiving problems and ways they attempted to cope. Four caregiver cases comprising 16 audiorecordings were qualitatively analyzed for aging-related stress during caregiving. Caregiving stress primarily involved the patients’ cognitive deficits. The caregiving experience also made older caregivers aware of their own aging and physical limitations, heightened self-imposed expectations to fulfill their role as spouse, and led them to consider their own mortality. This study informs development of caregiver interventions aimed at addressing the reciprocal challenge of caregiving and aging.
This study aims to provide insight into the role of grandchildren as informal hospice caregivers. It presents 4 cases that highlight the challenges and perceptions of grandchildren who care for a grandparent at the end of life. A researcher met regularly with family caregivers to discuss the problems or challenges during hospice caregiving. Although each caregiver presented unique individual experiences, several themes are common among the family caregivers including fatigue, stress, guilt, and loss of the “grandchild” identity. Grandchildren caregivers often take care of 3 generations (grandparents, parents, and children) and in many cases need additional assistance to help them overcome the challenges associated with managing a household, career, family, and caregiving roles.
hospice; caregiving; grandchildren; coping; caregiver burden; family relationships
This article provides a general introduction to implementation science—the discipline that studies the implementation process of research evidence—in the context of hospice and palliative care. By discussing how implementation science principles and frameworks can inform the design and implementation of intervention research, we aim to highlight how this approach can maximize the likelihood for translation and long-term adoption in clinical practice settings. We present 2 ongoing clinical trials in hospice that incorporate considerations for translation in their design and implementation as case studies for the implications of implementation science. This domain helps us better understand why established programs may lose their effectiveness over time or when transferred to other settings, why well-tested programs may exhibit unintended effects when introduced in new settings, or how an intervention can maximize cost-effectiveness with strategies for effective adoption. All these challenges are of significance to hospice and palliative care, where we seek to provide effective and efficient tools to improve care services. The emergence of this discipline calls for researchers and practitioners to carefully examine how to refine current and design new and innovative strategies to improve quality of care.
Hospice; End of life; Palliative care; Implementation science; Translational research
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.
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.
The purpose of this study was to further understand the hospice caregiver experience relating to pain management.
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.
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.
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.
hospice; caregivers; pain
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.
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.
To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences.
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.
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.
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.
caregivers; pain management; hospice team; health literacy
Terminal illness affects the entire family, both the one with the illness and their loved ones. These loved ones must deal not only with the loss but with the challenges of managing daily care. The purpose of the systematic review of the peer-reviewed literature was to identify and explore depression and related interventions for caregivers of hospice patients. While the prevalence of depression reported in the identified studies of hospice caregivers ranges from 26–57%, few interventions specific to this population have been tested and the research methods have been only moderately rigorous.
hospice; caregiving; depression
Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.
This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.
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.
As part of an ongoing randomized clinical trial in the midwestern United States, informal hospice caregivers participated in recorded hospice care planning discussions.
A selection of videorecorded interactions from an ongoing study was analyzed.
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.
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.
Informal, unpaid, family caregivers provide much hospice care in the United States. These caregivers suffer physically, psychologically, emotionally, and socially from the burden of caring. The most often identified area of caregiver burden is the management of end-of-life pain. However, little empirical evidence exists of effective interventions to help caregivers manage end-of-life pain, and issues surrounding caregiver pain management remain vague and undefined. Understanding these concerns will inform the design of effective caregiver interventions.
The purpose of this study was to describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients.
A content analysis of secondary data, namely, recordings of caregiver interviews, was conducted to describe pain management issues. These interviews were part of a larger clinical trial.
Multiple sessions with 29 informal caregivers, of patients dying of cancer, were audio-recorded. Subjects were purposively selected from two hospice programs in the Northwestern United States. Caregivers of noncancer patients were excluded from the study sample.
A framework of six major themes with subordinate subthemes was developed through a literature review and peer review. The framework was used to organize the content of 87 caregiver interviews. The six major themes identified in the analysis included Caregiver-Centric Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Communication and Teamwork Issues, Organizational Skill Issues, and Patient-Centric Issues.
This analysis clearly articulated and classified caregiver issues surrounding pain management. Future hospice research may benefit from the use of this analysis and framework in the development of tools to alleviate this major cause of caregiver burden.
Caregivers; hospice care; pain; pain management; palliative care; end-of-life
This study aims to examine the technical quality of videoconferencing used in hospice to engage caregivers as “virtual” members of interdisciplinary team meetings and their impressions of telehealth. Furthermore, it aims to compare the quality of plain old telephone service (POTS) and Web-based videoconferencing and provide recommendations for assessing video quality for telehealth group interactions.
Materials and Methods:
Data were obtained from an ongoing randomized clinical trial exploring Web-based videoconferencing and a completed prospective study of POTS-based videoconferencing in hospice. For the assessment of the technical quality, an observation form was used. Exit interviews with caregivers assessed impressions with the use of telehealth. A retrospective analysis of video-recorded team meetings was conducted rating attributes essential for the quality of videoconferencing (e.g., video artifacts, sharpness).
In total, 200 hospice team meetings were analyzed, including 114 video-recorded team meetings using Web-based videoconferencing and 86 meetings using POTS videophones. A direct comparison between the two modalities indicates the superiority of Web-based video in image quality but less so in audio quality. Transcripts of 19 caregiver interviews were analyzed. Caregivers found the use of videoconferencing to be a positive experience and a useful and essential tool to communicating with the hospice team.
This study highlights the potential of telehealth to improve communication in hospice and the need for new tools that capture the quality of video-mediated communication among multiple stakeholders and strategies to improve the ongoing documentation of telehealth group sessions' technical quality.
telecommunications; e-health; telehealth
Untreated pain is common for patients at the end of life. Informal caregivers, often family or friends of patients, are responsible for working with hospice staff to provide pain management. Interdisciplinary team meetings conducted in hospices every two weeks provide an opportunity for hospice staff to communicate about pain management with informal caregivers of hospice patients.
We present challenges, solutions, and keys strategies for carrying out a randomized trial in the hospice setting.
We are conducting the ACTIVE study (Assessing Caregivers for Team Intervention through Video Encounters) to determine whether regular videoconferencing between hospice patients' informal caregivers and the hospice care team alters caregivers' perceptions of pain management and patients' pain. Participants must be primary caregivers for a hospice patient, at least 18 years of age, capable of providing informed consent, and have access to a computer with a high-speed Internet connection or a telephone. We randomized caregivers to participate in biweekly team meetings through video or phone conferencing (intervention) or to receive usual care from the hospice. All patients receive standard hospice care regardless of the group assignment of their informal caregiver.
As of July 1, 2012, there has been 1038 new admissions to the participating hospices. Of 391 cases in which no contact was made, 233 patients had died or had life expectancy less than 14 days. Home visits were made to 271 interested and eligible caregivers; 249 caregivers of 233 patients were randomly assigned to the usual care or intervention arm. Enrollment is on pace to meet recruitment goals.
Thorough pilot-testing of instruments and procedures helped us overcome barriers to conducting research in this vulnerable population. Keys to success included obtaining support from hospice medical directors, including hospice staff in study preparation, minimizing the burden on hospice staff, housing research staff in each participating hospice, using newsletters to enhance communication, developing and maintaining a detailed procedural manual, producing regular data quality reports, developing a secure site to facilitate coding videos for qualitative studies, and holding regular teleconferences with key staff.
Late enrollment of many patients in hospice left little to no time for their caregivers to take part in the intervention. Assisting caregivers of patients with very short life expectancy may require different methods.
The challenges of conducting randomized trials with hospice patients and caregivers can be addressed with appropriate study design, well-tested research methods, and proactive monitoring of any issues or problems.
hospice; randomized trial; pain management; videoconference; caregivers; interdisciplinary teams
Collaboration between family caregivers and healthcare providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet bi-weekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregiver’s participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socio-emotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.
The ACTIVE (Assessing Caregivers for Team Intervention through Video Encounters) intervention uses technology to enable family caregivers to participate in hospice interdisciplinary team (IDT) meetings from geographically remote locations. Previous research has suggested that effective communication is critical to the success of these meetings. The purpose of this study was to explore communication in ACTIVE IDT meetings involving family caregivers and to assess the degree to which hospice teams use specific communication principles (summarized in the mnemonic VALUE: value, acknowledge, listen, understand, and elicit), which have been supported in previous research in intensive care settings.
Researchers analyzed team-family communication during 84 video- and/or audio-recorded care plan discussions that took place during ACTIVE team meetings, using a template approach to text analysis to determine the extent and quality of VALUE principles. The total content analyzed was 9 hours, 28 minutes in length.
Hospice clinicians routinely employed the VALUE communication principles in communication during ACTIVE IDT meetings with family caregivers, but the quality of this communication was frequently rated moderate or poor. The majority of such communication was task-focused. Less often, communication centered on emotional concerns and efforts to gain a more holistic understanding of patients and families.
This analysis suggests an opportunity for improving support for family members during ACTIVE IDT meetings. Members of hospice IDTs should remain aware of the opportunity for additional attention to the emotional realities of the hospice experience for family caregivers and could improve support for family caregivers during IDT meetings by ensuring that messages used to exemplify VALUE principles during team-family communication are of a high quality.
The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner.
Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings.
Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden.
Implications for Nursing Practice
By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver.
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.
Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.
Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.
Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.
Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.
empathy; hospice; family caregiver
Purpose of the study
Problem-solving therapy (PST) has been found effective when delivered to informal caregivers of patients with various conditions. In hospice, however, its translation to practice is impeded by the increased resources needed for its delivery. The study purpose was to compare the effectiveness of a PST intervention delivered face-to-face with one delivered via videophone to hospice primary caregivers.
Design and methods
The study design was a randomized noninferiority trial with two groups, Group 1 in which caregivers received PST face-to-face, and Group 2 in which caregivers received PST via videophone. Family hospice caregivers were recruited from two urban hospice agencies and received the PST intervention (in three visits for Group 1 or three video-calls in Group 2) in an approximate period of 20 days after hospice admission. Standard caregiver demographic data were collected. Psychometric instruments administered to caregivers at baseline and at study completion included the CQLI-R (Caregiver Quality of Life Index–Revised), the STAI (State-Trait Anxiety Inventory), and the PSI (Problem-Solving Inventory).
One hundred twenty-six caregivers were recruited in the study; 77 were randomly assigned to Group 1 and 49 to Group 2. PST delivered via video was not inferior to face-to-face delivery. The observed changes in scores were similar for each group. Caregiver quality of life improved and state anxiety decreased under both conditions.
The delivery of PST via videophone was not inferior to face-to-face. Audiovisual feedback captured by technology may be sufficient, providing a solution to the geographic barriers that often inhibit the delivery of these types of interventions to older adults in hospice.
Informal hospice caregivers may experience compromised well-being as a result of significant stress. Although quite limited, problem-solving interventions with this population have garnered empirical support for improved caregiver well-being.
Researchers sought to answer the following question: which specific intervention processes impacted informal hospice caregivers who participated in a problem-solving intervention?
Researchers conducted a thematic analysis of open-ended exit interviews with informal hospice caregivers who had participated in a structured problem-solving intervention.
Participants were friends and family members who provided unpaid care for a home hospice patient receiving services from one of two hospice agencies located in the Pacific Northwest region of the United States.
During their participation in the problem-solving intervention, caregivers actively reflected on caregiving, structured problem-solving efforts, partnered with interventionists, resolved problems, and gained confidence and control.
The study findings provide much needed depth to the field’s understanding of problem-solving interventions for informal hospice caregivers and can be used to enhance existing support services.
caregivers; hospices; intervention studies; problem solving; qualitative research
Care interventions are not routinely provided for hospice caregivers, despite widespread documentation of the burden and toll of the caregiving experience. Assessing caregivers for team interventions (ACT) proposes that holistic patient and family care includes ongoing caregiver needs assessment of primary, secondary, and intrapsychic stressors. In this study, our goal was to describe the variance in stressors for caregivers to establish evidence for the ACT theoretical framework. We used secondary interview data from a randomized controlled trial to analyze hospice caregiver discussions about concerns. We found variances in stress types, suggesting that caregiver interventions should range from knowledge and skill building to cognitive-behavioral interventions that aid in coping. Family members who assume the role of primary caregiver for a dying loved one need to be routinely assessed by hospice providers for customized interventions.
caregivers/caregiving; coping and adaptation; end-of-life issues; illness and disease; life-threatening/terminal; psychosocial issues