Lessons learned from a secret Facebook support group.

The National Association of Social Workers developed practice standards for social workers using technology in their practice. These standards were derived from the foundation of the social work code of ethics and are helpful as social workers explore the use of new tools for the benefit of their clients. Hospice caregivers, both active and bereaved, are in great need of support but are often unable to attend traditional support groups. Facebook secret groups offer social workers a potential tool, given the geographic barriers that exist for traditional face-to-face support groups. The authors' experience with a secret Facebook group indicates that the technology can be useful when managed by a social worker facilitator. As social workers continue to explore helpful ways to use technology with clients, it is critical that they evaluate that practice and assess the clinical outcomes to establish an evidence base behind this practice.

"It is the 'starting over' part that is so hard": Using an online group to support hospice bereavement.

OBJECTIVE: Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers. METHOD: A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention. RESULTS: Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention. SIGNIFICANCE OF RESULTS: This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

The entry-level physical therapist: a case for COMFORT communication training.

Entry-level physical therapists provide clinical care for patients with functional mobility limitations. Their care spans the continuum of settings, disease processes, and diagnoses. Although effective communication skills are required to conduct physical therapy work, there is limited instruction provided in physical therapy education and students receive little exposure to seriously or chronically ill patients. The goal of this study was to assess the effects of communication training for the entry-level physical therapist facing palliative and end-of-life communication with patients/families. A pre-post survey design and narrative writing were used to assess the effect of the COMFORT communication training curriculum provided to doctorally trained, graduating physical therapists. The study demonstrated decreased student apprehension about communicating with dying patients and their families, and a comparison of mean scores reflecting the students' communication knowledge, confidence, and behaviors increased in a positive direction. As students became more willing to communicate, they were also more adept at integrating task and relational messages, as well as assimilating emotional support messages for patients and families. This study shows promise for the feasibility and utilization of the COMFORT curriculum for entry-level physical therapists. Further research should address the integration of COMFORT earlier into physical therapy education, as well as assess evidence of COMFORT communication skills in the clinical context.

Rethinking family caregiving: tailoring cognitive-behavioral therapies to the hospice experience.

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 contex- tualize 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.

Palliative care communication.

OBJECTIVES: To summarize the challenges of teaching, practicing, and learning palliative care communication and offer resources for improving skills and educating others. DATA SOURCES: A theoretically grounded, evidence-based communication curriculum called COMFORT (Communication, Orientation and opportunity, Mindful presence, Family, Openings, Relating, and Team). CONCLUSION: The COMFORT curriculum is available for free through a Web site, a smartphone/iPad application, and online for continuing education units. IMPLICATIONS FOR NURSING PRACTICE: The COMFORT curriculum provides resources to support the expansion and inclusion of palliative care practice not only in oncology, but also in a wide variety of disease contexts.

Perceived benefits and challenges of an oncology nurse support group.

This study explores the perceived benefits and barriers of participating in a monthly oncology nurse support group. Ten oncology nurses participated in an average of seven support group meetings over a one-year period. Interviews were conducted, transcribed, analyzed, and thematized using qualitative descriptive methods. Clear benefits for oncology nurses are indicated; participants described a reduction in end-of-life care stress, an increase in self-care, and improved patient and team care. Barriers include scheduling and compensation, as well as group leadership labors. This study provides further confirmation that oncology nurses receive multiple benefits from the support group structure. Peer support groups for oncology nurses seem a promising and economical communication intervention for mitigating burnout, professional dissatisfaction, patient care distress, and interprofessional communication deficits.

Exploring aging-related stress among older spousal caregivers.

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.

YouTube as a tool for pain management with informal caregivers of cancer patients: a systematic review.

CONTEXT: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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 most videos addressed the need for caregiver pain assessment (35%) and caregiver education (23%), few actually addressed specific caregiver pain management barriers. CONCLUSION: Most 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.

Assessment of an interprofessional online curriculum for palliative care communication training.

BACKGROUND: Curricular changes to palliative care communication training are needed in order to accommodate a variety of learners, especially in lieu of the projected national shortage of hospice and palliative medicine physicians and nurses. OBJECTIVE: This study assessed the utility of a palliative care communication curriculum offered through an online platform and also examined health care professionals' clinical communication experiences related to palliative care topics. DESIGN: Four of the seven modules of the COMFORT communication curriculum were made available online, and participant assessments and knowledge skills were measured. SETTING: Modules were completed and assessed by 177 participants, including 105 nurses, 25 physicians, and a category of 'other' disciplines totaling 47. MEASUREMENTS: Premodule surveys consisted of closed-ended items developed by the interdisciplinary research team. Postcurriculum evaluation and knowledge quizzes were used to assess program effectiveness. RESULTS: Among all participants, end-of-life care and recurrence of disease were considered the most challenging communication contexts and discussion about treatment options the least challenging. Mean responses to postcurriculum evaluation for all modules across nurse and physician participants was greater than 4 on a scale of 1 to 5. CONCLUSIONS: This study identifies the COMFORT communication curriculum as an effective online curricular tool to teach multiple disciplines specific palliative care communication.

Caregiver evaluation of the ACTIVE intervention: "it was like we were sitting at the table with everyone".

Central to the hospice philosophy is the belief that the patient/family owns the plan of care. However, barriers prevent the majority of hospice patients/families from participating in the meetings where plans are created and revised. This study evaluates the participant experience of the ACTIVE (assessing caregivers for team intervention via video encounters) intervention, designed to use web conferencing technology to overcome the barriers of participation in development and review of individual care plans. Interviews were done with hospice caregivers following the death of their loved one. Caregivers involved in the intervention reported positive relationships with the hospice staff, felt involved in decision making, and got answers to their questions. Furthermore they reported staff was responsive to their needs and that participation increased their confidence, trust in the team, and provided a feeling of not being alone if they needed help. Challenges included issues with the technology, a feeling of being rushed and a frustration when they did not feel included or involved. Suggestions for improving the intervention included a more frequent meeting time, a need for to train hospice staff how to conduct web-based interactions, and suggestions for additional information for caregivers.

Implementation science: implications for intervention research in hospice and palliative care.

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.

Exploring the collective hospice caregiving experience.

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.

Understanding social support burden among family caregivers.

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 caregiver depression: the evidence surrounding the greatest pain of all.

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.

COMFORT: evaluating a new communication curriculum with nurse leaders.

Nursing faculty face increasing instructional demands to keep pace with mounting knowledge and competency requirements for student nurses. In the context of nursing practice, tasks and time pressures detract from the high skill and aptitude expectation of communication. The communication, orientation and opportunity, mindful presence, family, openings, relating, and team (COMFORT) curriculum, an acronym that represents 7 basic nursing communication principles, has been introduced into the communication module of the End-of-Life Nursing Education Consortium, which currently provides the only standardized undergraduate and graduate nurse training in hospice and palliative care. This study examines the potential efficacy of the COMFORT curriculum for everyday communication challenges experienced by members of the Georgia Organization of Nurse Leaders. Participants were prompted to describe communication barriers and then apply an aspect of the COMFORT curriculum to this barrier. Responses revealed primary communication barriers with co-workers and patient/families. Nurses predominantly identified directly correlating components in the COMFORT framework (C-communication, F-family) as solutions to the topics described as barriers. Based on confirmation of extant literature addressing generalist nurse communication challenges, there is support for the inclusion of COMFORT across the nursing curriculum to efficiently and effectively teach communication strategies to nurses.

Patient safety incidents in hospice care: observations from interdisciplinary case conferences.

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.

Using medical words with family caregivers.

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.

Hospice caregivers' experiences with pain management: "I'm not a doctor, and I don't know if I helped her go faster or slower".

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: Semistructured 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 of 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 that 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.

Informal hospice caregiver pain management concerns: a qualitative study.

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.

Telehealth group interactions in the hospice setting: assessing technical quality across platforms.

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.