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 health care delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making.
Conclusions
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.
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.
Although hospices are required to provide caregivers with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. The Dual Processing Model of Bereavement was used as a theoretical framework for assessing the potential of a Secret Facebook Group for bereaved hospice caregivers. Online communication was analyzed and reported outcome measures were compared pre and post intervention. Bereaved caregivers shared abrupt and anticipated triggers resulting in loss-orientation and shared restoration through storytelling, advising, and encouragement. Caregiver anxiety and depression were lower post intervention. This study highlights the promise of Facebook for hospice bereavement support.
Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents’ family members has been limited. The purpose of this qualitative investigation was to explore family members’ experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members’ experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated.
The life span of patients with cystic fibrosis (CF) continues to extend due to advances in treatments and care. The rate of pregnancy for female patients with CF has also continued to rise. The purpose of this study was to systematically review the available literature on female patients with CF and their knowledge of sexual and reproductive health. A priori, the research question was posed: What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? Three broad areas of knowledge lacking in female patients with CF were identified: physiological, genetic, and psychosocial. The results imply female patients with CF are not equipped with adequate information for the decision-making process involved in sexual and reproductive choices. Social workers play an important and dynamic role on the multidisciplinary CF care team and can improve the quality of life for women with CF by addressing the psychosocial processes associated with the disease. Because of social work's important role in the holistic care approach to CF and other chronic and debilitating illnesses, social work literature should focus greater attention on these issues.
These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.
Conducting prospective studies in hospices can be difficult. We conducted a systematic review to find randomized trials that have been conducted in US hospices and to review them for quality and potential bias. Ten studies met our inclusion criteria; a wide variety of outcomes were studied. Most of the studies had at least moderate risk of bias due either to incomplete reporting of methods or the inability to blind investigators. To provide better evidence-based hospice care, more well-designed trials that are consistently reported are needed.
Women involved in all aspects of the United States Armed Forces face mental health needs that are unique from women in the general population. Because the most recent wars in Iraq and Afghanistan are involving more women in combat situations, social workers encounter female clients who are increasingly experiencing posttraumatic stress disorder, substance misuse, and sexual violence. Special attention must be paid particularly to women who serve in the National Guard or Reserves, as they have different concerns than enlisted active duty women. These concerns include less social support and fewer resources upon return from deployment. Thus, it is imperative for social workers in the community to be aware of these military women's experiences and unique mental health challenges in order to effectively treat their needs.
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