Karla Washington

Barriers to Pain Management: Caregiver Perceptions and Pain Talk by Hospice Interdisciplinary Teams

As patients are cared for in their homes by family caregivers, several challenges arise in effective pain and symptom management. Despite hospices reputation as the gold standard for terminal care, there is still a need to improve pain management practices, including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver--patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire. Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the Caregiver Pain Medicine Questionnaire by the research team, there was only one discussion of caregiver pain-related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain-related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.

A study of information flow in hospice interdisciplinary team meetings

The aim of this study was to explore the information flow of hospice interdisciplinary meetings focusing on information access, exchange and documentation. The study participants were members of four hospice interdisciplinary teams in the Midwestern United States. Team members included a diverse range of professionals including physicians, nurses, social workers, bereavement counselors, and others. A total of 81 patient care discussions were videotaped and transcribed. A content analysis revealed several themes that needed to be addressed to improve the overall information flow, such as access to and recording of information, documentation of services, obtaining information from absent team members, data redundancy and updating of recorded information. On average, 5% of all utterances when discussing a patient case were focused on soliciting information from the member who had access to the patient chart. In 12.3% of all discussions, members referred to an absent member who could have provided additional information. In 8.6% of all discussions the same facts were repeated three times or more. Based on the findings we propose guidelines that can address potential informational gaps and enhance team communication in hospice.

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.

‘They’re part of the team’: participant evaluation of the ACTIVE intervention

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

Telehospice acceptance among providers: a multidisciplinary comparison.

Telehospice, the delivery of end-of-life care using telecommunications technologies, allows increased interaction between providers and patients. For telehospice to be successful, it must first be accepted by professionals as a useful and user-friendly method of service delivery. Existing research regarding provider acceptance of telehospice has been limited in geographic scope and has often excluded input from key members of the hospice team. This study measured telehospice acceptance in a national sample of hospice professionals from various disciplines (N = 160). Results indicate that acceptance was moderately high overall, although significant differences existed among individuals from different disciplines, with nurses and administrators generally indicating higher levels of acceptance than social workers and chaplains. Findings demonstrate that telehospice interventions will likely be more readily accepted by nursing and administrative staff members, while those employees who address primarily psychosocial issues may be reluctant to use such technology.

A Systematic Review of the Evidence Base for Telehospice

Abstract The use of telehealth technologies to overcome the geographic distances in the delivery of hospice care has been termed telehospice. Although telehospice research has been conducted over the last 10 years, little is known about the comprehensive findings within the field. The purpose of this systematic article was to focus on available research and answer the question, What is the state of the evidence related to telehospice services? The article was limited to studies that had been published in the English language and indexed between January 1, 2000 and March 23, 2010. Indexed databases included PubMed and PsycINFO and contained specified key words. Only research published in peer review journals and reporting empirical data, rather than opinion or editorials, were included. A two-part scoring framework was modified and applied to assess the methodological rigor and pertinence of each study. Scoring criteria allowed the evaluation of both quantitative and qualitative methodologies. Twenty-six studies were identified with the search strategy. Although limited in number and in strength, studies have evaluated the use of a variety of technologies, attitudes toward use by providers and consumers, clinical outcomes, barriers, readiness, and cost. A small evidence base for telehospice has emerged over the last 10 years. Although the evidence is of medium strength, its pertinence is strong. The evidence base could be strengthened with randomized trials and additional clinical-outcome-focused research in larger randomized samples and in qualitative studies with better-described samples.

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.

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.

Home Internet Use among Hospice Service Recipients: Recommendations for Web-Based Interventions

A growing number of researchers are exploring strategies to improve hospice care through the use of web-based technologies. This study of 50 hospice patients and caregivers was conducted in order to obtain data describing home internet use among hospice service recipients. Over half (58%) of respondents reported having home internet access, with most using a dial-up connection. Primary reasons for accessing the web included e-mail and information searches. Findings suggest that the hospice industry should explore adopting web-based technologies as a strategy to enhance rather than replace traditional care. Providers must consider the strengths and potential limitations of patients and caregivers when designing online services. Specific recommendations for web-based hospice interventions are discussed at length.

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers.

Background: Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider–patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. Aim: We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. Design: We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Setting/participants: Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Results: Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. Conclusion: The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.