IU Indianapolis ScholarWorks :: Browsing by Author "Helft, Paul R."

Browsing by Author "Helft, Paul R."

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A Case of Error Disclosure: A Communication Privacy Management Analysis
(Sage, 2013-12-01) Petronio, Sandra; Helft, Paul R.; Child, Jeffrey T.; Communication Studies, School of Liberal Arts
To better understand the process of disclosing medical errors to patients, this research offers a case analysis using Petronios's theoretical frame of Communication Privacy Management (CPM). Given the resistance clinicians often feel about error disclosure, insights into the way choices are made by the clinicians in telling patients about the mistake has the potential to address reasons for resistance. Applying the evidenced-based CPM theory, developed over the last 35 years and dedicated to studying disclosure phenomenon, to disclosing medical mistakes potentially has the ability to reshape thinking about the error disclosure process. Using a composite case representing a surgical mistake, analysis based on CPM theory is offered to gain insights into conversational routines and disclosure management choices of revealing a medical error. The results of this analysis show that an underlying assumption of health information ownership by the patient and family can be at odds with the way the clinician tends to control disclosure about the error. In addition, the case analysis illustrates that there are embedded patterns of disclosure that emerge out of conversations the clinician has with the patient and the patient's family members. These patterns unfold privacy management decisions on the part of the clinician that impact how the patient is told about the error and the way that patients interpret the meaning of the disclosure. These findings suggest the need for a better understanding of how patients manage their private health information in relationship to their expectations for the way they see the clinician caring for or controlling their health information about errors. Significance for public health: Much of the mission central to public health sits squarely on the ability to communicate effectively. This case analysis offers an in-depth assessment of how error disclosure is complicated by misunderstandings, assuming ownership and control over information, unwittingly following conversational scripts that convey misleading messages, and the difficulty in regulating privacy boundaries in the stressful circumstances that occur with error disclosures. As a consequence, the potential contribution to public health is the ability to more clearly see the significance of the disclosure process that has implications for many public health issues.
Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study
(Cambridge University Press, 2019-06) Beck, Adrienne; Cottingham, Ann H.; Stutz, Patrick V.; Gruber, Rachel; Bernat, Jennifer K.; Helft, Paul R.; Wilhelm, Laura; Schmidt, Karen; Stout, Madison E.; Willard, Claire; Johns, Shelley A.; Medicine, School of Medicine
Objective Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients. Method Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values. Result Findings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed “family” as the most common core value in their legacy projects. Expression of “autonomy” was also a notable finding. Significance of results Abbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer.
Acceptance and commitment therapy for fatigue interference in advanced gastrointestinal cancer and caregiver burden: protocol of a pilot randomized controlled trial
(BMC, 2021-04-20) Mosher, Catherine E.; Secinti, Ekin; Kroenke, Kurt; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J., Sr.; Sehdev, Amikar; Al-Hader, Ahmad A.; Champion, Victoria L.; Johns, Shelley A.; Psychology, School of Science
Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer.
Acceptance and commitment therapy for patient fatigue interference and caregiver burden in advanced gastrointestinal cancer: Results of a pilot randomized trial
(Sage, 2022) Mosher, Catherine E.; Secinti, Ekin; Wu, Wei; Kashy, Deborah A.; Kroenke, Kurt; Bricker, Jonathan B.; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J., Sr.; Sehdev, Amikar; Al-Hader, Ahmad A.; Champion, Victoria L.; Johns, Shelley A.; Psychology, School of Science
Background: Fatigue often interferes with functioning in patients with advanced cancer, resulting in increased family caregiver burden. Acceptance and commitment therapy, a promising intervention for cancer-related suffering, has rarely been applied to dyads coping with advanced cancer. Aim: To examine the feasibility, acceptability, and preliminary efficacy of acceptance and commitment therapy for patient-caregiver dyads coping with advanced gastrointestinal cancer. Primary outcomes were patient fatigue interference and caregiver burden. Design: In this pilot trial, dyads were randomized to six weekly sessions of telephone-delivered acceptance and commitment therapy or education/support, an attention control. Outcomes were assessed at baseline and at 2 weeks and 3 months post-intervention. Setting/participants: Forty patients with stage III-IV gastrointestinal cancer and fatigue interference and family caregivers with burden or distress were recruited from two oncology clinics and randomized. Results: The eligibility screening rate (54%) and retention rate (81% at 2 weeks post-intervention) demonstrated feasibility. At 2 weeks post-intervention, acceptance and commitment therapy participants reported high intervention helpfulness (mean=4.25/5.00). Group differences in outcomes were not statistically significant. However, when examining within-group change, acceptance and commitment therapy patients showed moderate decline in fatigue interference at both follow-ups, whereas education/support patients did not show improvement at either follow-up. Acceptance and commitment therapy caregivers showed medium decline in burden at 2 weeks that was not sustained at 3 months, whereas education/support caregivers showed little change in burden. Conclusions: Acceptance and commitment therapy showed strong feasibility, acceptability, and promise and warrants further testing.
Addressing Personal Barriers to Advance Care Planning: Qualitative Investigation of a Mindfulness-Based Intervention for Adults with Cancer and Their Family Caregivers
(Cambridge, 2018) Cottingham, Ann H.; Beck-Coon, Kathleen; Bernat, Jannifer K.; Helft, Paul R.; Schmidt, Karen; Shields, Cleveland G.; Torke, Alexia M.; Johns, Shelley A.; Medicine, School of Medicine
Objective Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods. Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of results The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.
An ethical analysis of endoscopic therapy decision-making in patients with refractory substance use disorder and chronic pancreatitis
(Elsevier, 2022) Al-Moussally, Feras; Fogel, Evan L.; Helft, Paul R.; Medicine, School of Medicine
CEASE: A guide for clinicians on how to stop resuscitation efforts
(ATS, 2015-03) Torke, Alexia M.; Bledsoe, Patricia; Wocial, Lucia D.; Bosslet, Gabriel T.; Helft, Paul R.; Department of Medicine, IU School of Medicine
Resuscitation programs such as Advanced Cardiac Life Support, Cardiac Life Support, Pediatric Advanced Life Support, and the Neonatal Resuscitation Program offer inadequate guidance to physicians who must ultimately decide when to stop resuscitation efforts. These decisions involve clinical and ethical judgments and are complicated by communication challenges, group dynamics, and family considerations. This article presents a framework, summarized in a mnemonic (CEASE: Clinical Features, Effectiveness, Ask, Stop, Explain), for how to stop resuscitation efforts and communicate that decision to clinicians and ultimately the patient’s family. Rather than a decision rule, this mnemonic represents a framework based on best evidence for when physicians are considering stopping resuscitation efforts and provides guidance on how to communicate that decision.
Clinical benefit of a precision medicine based approach for guiding treatment of refractory cancers
(Impact Journals, 2016-08-30) Radovich, Milan; Kiel, Patrick J.; Nance, Stacy M.; Niland, Erin E.; Parsley, Megan E.; Ferguson, Meagan E.; Jiang, Guanglong; Ammakkanavar, Natraj R.; Einhorn, Lawrence H.; Cheng, Liang; Nassiri, Mehdi; Davidson, Darrell D.; Rushing, Daniel A.; Loehrer, Patrick J.; Pili, Roberto; Hanna, Nasser; Callaghan, J. Thomas; Skaar, Todd C.; Helft, Paul R.; Shahda, Safi; O’Neil, Bert H.; Schneider, Bryan P.; Medicine, School of Medicine
Patients and methods: Patients with metastatic solid tumors who had progressed on at least one line of standard of care therapy were referred to the Indiana University Health Precision Genomics Program. Tumor samples were submitted for DNA & RNA next-generation sequencing, fluorescence in situ hybridization, and immunohistochemistry for actionable targets. A multi-disciplinary tumor board reviewed all results. For each patient, the ratio of progression-free survival (PFS) of the genomically guided line of therapy divided by the PFS of their prior line was calculated. Patients whose PFS ratio was ≥ 1.3 were deemed to have a meaningful improvement in PFS. Results: From April 2014-October 2015, 168 patients were evaluated and 101 patients achieved adequate clinical follow-up for analysis. 19 of 44 (43.2%) patients treated with genomically guided therapy attained a PFS ratio ≥ 1.3 vs. 3 of 57 (5.3%) treated with non-genomically guided therapy (p < 0.0001). Similarly, overall PFS ratios (irrespective of cutoff) were higher for patients with genomically guided therapy vs non-genomically guided therapy (p = 0.05). Further, patients treated with genomically guided therapy had a superior median PFS compared to those treated with non-genomically guided therapy (86 days vs. 49 days, p = 0.005, H.R. = 0.55, 95% C.I.:0.37-0.84). Conclusion: Patients with refractory metastatic cancer who receive genomically guided therapy have improved PFS ratios and longer median PFS compared to patients who do not receive genomically guided therapy.
Communicating with Clinicians: The Experiences of Surrogate Decision‐Makers for Hospitalized Older Adults
(2012-08) Torke, Alexia M.; Petronio, Sandra; Purnell, Christianna E.; Sachs, Greg A.; Helft, Paul R.; Callahan, Christopher M.
OBJECTIVES: To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult. DESIGN: Semistructured interviews about a recent hospitalization. SETTING: Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital. PARTICIPANTS: Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual aged 65 and older and were available for an interview within 1 month (2-5 months if the patient died). MEASUREMENTS: Interviews were audio-recorded, transcribed, and analyzed using methods of grounded theory. RESULTS: Thirty-five surrogates were interviewed (80% female, 44% white, 56% African American). Three primary themes emerged. First, it was found that the nature of surrogate-clinician relationships was best characterized as a relationship with a "team" of clinicians rather than individual clinicians because of frequent staff changes and multiple clinicians. Second, surrogates reported their communication needs, including frequent communication, information, and emotional support. Surrogates valued communication from any member of the clinical team, including nurses, social workers, and physicians. Third, surrogates described trust and mistrust, which were formed largely through surrogates' communication experiences. CONCLUSION: In the hospital, surrogates form relationships with a "team" of clinicians rather than with individuals, yet effective communication and expressions of emotional support frequently occur, which surrogates value highly. Future interventions should focus on meeting surrogates' needs for frequent communication and high levels of information and emotional support.
A Conceptual Model of the Role of Communication in Surrogate Decision Making for Hospitalized Adults
(2012-04) Torke, Alexia M.; Petronio, Sandra; Sachs, Greg A.; Helft, Paul R.; Purnell, Christianna E.
OBJECTIVE: To build a conceptual model of the role of communication in decision making, based on literature from medicine, communication studies and medical ethics. METHODS: We proposed a model and described each construct in detail. We review what is known about interpersonal and patient-physician communication, described literature about surrogate-clinician communication, and discussed implications for our developing model. RESULTS: The communication literature proposes two major elements of interpersonal communication: information processing and relationship building. These elements are composed of constructs such as information disclosure and emotional support that are likely to be relevant to decision making. We propose these elements of communication impact decision making, which in turn affects outcomes for both patients and surrogates. Decision making quality may also mediate the relationship between communication and outcomes. CONCLUSION: Although many elements of the model have been studied in relation to patient-clinician communication, there is limited data about surrogate decision making. There is evidence of high surrogate distress associated with decision making that may be alleviated by communication-focused interventions. More research is needed to test the relationships proposed in the model. PRACTICE IMPLICATIONS: Good communication with surrogates may improve both the quality of medical decisions and outcomes for the patient and surrogate.

Browsing by Author "Helft, Paul R."

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