“IT’S A VERY TRICKY COMMUNICATION SITUATION : A COMPREHENSIVE INVESTIGATION OF END-OF-LIFE FAMILY CAREGIVER COMMUNICATION BURDEN

Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why. Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience. Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed

Family Perspectives on the Hospice Experience in Adult Family Homes

Article on family perspectives on the hospice experience in adult family homes

Stress Variances Among Informal Hospice Caregivers

Article on stress variances among informal hospice caregivers

Fostering Interdisciplinary Boundary Spanning in Health Communication: A Call for a Paradigm Shift

Scholarship in the field of health communication is broad, with interdisciplinary contributions from researchers trained in a variety of fields including communication, nursing, medicine, pharmacy, public health, and social work. In this paper, we explore the role of “health communication boundary spanners” (HCBS), individuals whose scholarly work and academic appointment reflect dual citizenship in both the communication discipline and the health professions or public health. Using a process of critical reflective inquiry, we elucidate opportunities and challenges associated with HCBS across the spectrum of health communication in order to provide guidance for individuals pursuing boundary spanning roles and those who supervise and mentor them. This dual citizen role suggests that HCBS have unique skills, identities, perspectives, and practices that contribute new ways of being and knowing that transcend traditional disciplinary boundaries. The health communication field is evolving in response to the need to address significant healthcare and policy problems. No one discipline has the ability to single-handedly fix our current healthcare systems. Narrative data from this study illustrate the importance of seeing HCBS work beyond simply being informed by disciplinary knowledge. Rather, we suggest that adapting ways of knowing and definitions of expertise is an integral part of the solution to solving persistent health problems

"The Long Goodbye": Uncertainty Management in Alzheimer's Caregivers

Caregivers for individuals diagnosed with Alzheimer's disease (AD) shoulder a remarkably complex burden as compared to other caregivers of elderly individuals. For long distance caregivers, geographical separation further compounds the problems experienced by AD caregivers, as they are isolated from family members and support networks. Both on-site and long-distance AD caregivers experience uncertainty; the findings from this study illustrate how AD caregivers manage the uncertainty of the disease and primary care, as well as how uncertainty differs between on-site and long-distance caregivers. AD caregiver (N = 13) interviews were transcribed and qualitatively analyzed using uncertainty management theory as a thematic lens. The analysis revealed that AD caregivers experience overwhelming feelings of burden, guilt, and doubt; however, these feelings manifest differently depending on caregiver type. The findings of this study demonstrate that sources for obtaining information regarding AD and caregiving were useful for on-site caregivers; however, the sources did not account for the needs of long-distance caregivers or the psychosocial needs of on-site caregivers. Furthermore, AD caregivers did not seek support or information about AD and caregiving from health care professionals. Implications for future research regarding long-distance and on-site AD caregiving are discussed

Understanding caregiver challenges and social support needs

By age fourteen, Ty began looking like his dad-a concave chest and an acute kyphotic curve in the upper spine. They looked so much the same in their faces that their nowsimilar silhouette seemed to be a family trait passed from father to son

How we involved bereaved family caregivers in palliative care education

As palliative care coursework continues to proliferate within US medical education, novel curriculum approaches have included the use of cancer survivors and family caregivers. We included bereaved family caregivers in structured clinical teaching. Methods: First year students were exposed to a lecture about death and dying and then met with a bereaved caregiver in small groups of 1015 for a presentation about the caregiving experience, bereavement, and question and answer period. Substantial pre-planning was involved to recruit caregivers and arrange for classroom space. Results: Participation evoked caregiver anxiety but was resolved with adequate arrangement of the classroom and student introductions. Conclusions: Future implementation of bereaved caregivers in palliative coursework should include an appropriate follow-up phone call as well as recruiting more caregivers than necessary for the curriculum. © 2011 Informa UK Ltd

Palliative care communication curriculum: What can students learn from an unfolding case?

Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. © The Author(s) 2011

Parental self-efficacy managing a child’s medications and treatments: adaptation of a PROMIS measure

Plain English Summary Self-efficacy, which is someone’s confidence in completing a task, is important for managing a chronic health condition. Knowing parents’ self-efficacy managing their children’s health conditions may be an important step in supporting their children’s health but no single measure is available for diverse sets of conditions. In this paper, we present the development of a new patient reported outcomes measure designed to assess self-efficacy of parents managing their child’s chronic and/or disabling conditions. We found that the measure is both acceptable and understandable to English and Spanish speakers and may be useful to proactively identify parents in need of additional supports at hospital discharge or at the time of a new diagnosis