Sara Shaunfield

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.

Stress Variances Among Informal Hospice Caregivers

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.

Using communication to manage uncertainty about cervical cancer screening guideline adherence among Appalachian women

ABSTRACT Changes to the United States Preventive Services Task Force (USPSTF) recommendations for cervical cancer preventive services have led to patient confusion, especially in medically underserved populations. We investigated how patient uncertainty concerning cervical cancer screening guidelines is appraised and managed through communication with healthcare providers by conducting in-depth, face-to-face interviews with 24 adult women between the ages of 24 and 65 (m = 41, SD = 14) living in Appalachia Kentucky. In general, participants expressed a high degree of uncertainty about the updated cervical cancer screening guidelines and appraised this uncertainty as both a danger and an opportunity. Communication with healthcare providers served both to exacerbate and to mitigate patient uncertainty. The study identifies how healthcare providers may use the change in USPSTF guidelines as a “teachable moment” to productively counsel patients on the importance of timely screening, the typical progression of certain types of high-risk HPV (human papillomavirus) infection to cervical cancer, and the importance of follow-up care.

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.

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

OBJECTIVE The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. METHODS Empathic opportunities and hospice team responses were analyzed from bi-weekly 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. RESULTS 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 acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. CONCLUSION 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. PRACTICE IMPLICATIONS 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.

Normative Social Support in Young Adult Cancer Survivors

Following a cancer diagnosis, young adults (YAs; that is, 18-39) often experience altered social relationships with family, friends, romantic partners, and peers. In light of the social struggles YA patients and survivors report due to cancer’s biographical disruption, we elicited narratives from 30 YA cancer survivors to examine how their normative perceptions of social support functioned to hinder and assist them in coping with the cancer experience. Through thematic narrative analysis of their individual accounts, YA survivors explained why and how they perceived various support attempts from peers and loved ones to be effective (i.e., being treated “normally”), ineffective (i.e., receiving pity, negative stories, rudeness, excessive self-monitoring, and returns from estrangement), and both effective and ineffective (e.g., instrumental and relational support) in integrating cancer into their biographies. Implications for the advancement of interpersonal communication theory and for the development of age-appropriate communication interventions, educational programs, and informational resources are discussed.

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.

Volunteers as Facilitators of Communication About Pain A Feasibility Study

Often unskilled for the hospice caregiving role, family members who provide patient care at home need support to facilitate pain management. Volunteers who serve as members of the hospice team may be able to complement staff efforts to discuss pain with caregivers. A pilot project was developed to determine if volunteers could be trained to facilitate communication about pain with family caregivers. Two hospice volunteers were trained and three family caregivers received the intervention in their homes. Caregivers and volunteers were interviewed about the experience. Both caregivers and volunteers reported a rewarding and positive experience. Caregivers prioritized the need to talk with someone, and volunteers preferred working with caregivers instead of administrative support duties. Volunteers could be trained to deliver the intervention material, but information from volunteer visits was not immediately reported to hospice staff members. Future research should assess the benefits of using hospice volunteers to support clinical efforts.

Application of the VALUE Communication Principles in ACTIVE Hospice Team Meetings

BACKGROUND 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. METHODS 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. RESULTS 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. CONCLUSIONS 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.

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 10–15 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.