RESPECT Pilot Grantees
Stories and Music for Parents and Young Children with Cancer: A Clinical Feasibility Study
July 1, 2012- June 30, 2013
Palliative care is a comprehensive system of care that provides comfort care, pain and symptom management, as well as psychosocial support to patients/families with potentially life-threatening or chronic illnesses. Emotional distress experienced by parents and young children with cancer during treatment is a prevalent and persistent problem that impacts family functioning, parent-child interaction, and quality of life. In the longer-term, this acute emotional distress is related to traumatic stress symptoms after treatment ends. These families require palliative care interventions to manage acute treatment distress and prevent psychosocial problems during survivorship; yet no family-based, distress management interventions have simultaneously addressed the interrelated needs of parents and young children with cancer. For young children, play is a means for communicating about and working through stressful situations. Music-based play interventions are particularly promising because music: 1) is a naturally occurring parent-child activity; 2) provides structure to support parent-child interactions during stressful hospitalizations; 3) positively influences mood; and 4) is easily integrated into family routines. Our previous research found that a therapist-led Active Music Engagement (AME) intervention reduced emotional distress in young children hospitalized for cancer treatment. However, the AME needs to be translated into an easily taught, cost-effective, and sustainable intervention to extend its availability. The parent implemented AME (AME+P) uses parent education/coaching on the use of music-based play to neutralize potentially traumatic experiences of cancer treatment (reduce parent/child distress), while supporting the positive growth of families (improve family functioning, parent-child interactions, quality of life). In this two-group, randomized pilot study we will test the AME+P against an attention control condition. We aim to examine: 1) feasibility/acceptability of our proposed study procedures and AME parent implementation, 2) parent and child perspectives about meaningfulness and helpfulness of the intervention, and 3) determine estimates of intervention effects on parent and child outcomes, and potential mediators.
Supportive Intervention for Advanced Lung Cancer Patients and their Partners
January 1, 2011-December 31, 2011
Over half a million Americans died from some form of cancer in 2008. Facing the probability of death and working through the associated emotions is associated with less distress at the end of life for the cancer patient and partner. There have been only a handful of empirically tested programs focused on the death-related concerns of dying patients, none of which include a partner. Throughout the cancer progression, and especially at the end of life, relationship issues are of foremost concern for the patient, and the distress of the patient at the time of death affects the partner much as it does at other points of the cancer journey. The objective of this application is to evaluate the feasibility, commitment to, and satisfaction with, an intervention to decrease death-related distress in patients and their partners. We will also do a preliminary evaluation of efficacy and examine potential mediator variables. Lung cancer patients and their spouses (n = 12 couples) will be recruited through the IUSCC cancer center into a 4 week intervention. The intervention draws from extensive, cross-disciplinary and cross-theoretical research in palliative care and end of life. The result is a meaning-centered supportive intervention that includes activities and topics that have demonstrated efficacy across a large population of patients, providers and settings. Qualitative interviews during the post-intervention assessment will provide rich information to support the quantitative data and suggest future improvements to the intervention. The proposed pilot study will provide the foundation for a grant proposal to test the intervention in a large-scale study. The findings from both the qualitative and quantitative data will inform modification of the current intervention to increase its efficacy.
Kevin Rand, Larry Cripe
Qualitative Analysis of the Goals and Goal-Related Thoughts of Patients with Advanced Cancer
July 1, 2011-June 30, 2011
Patients with advanced cancer, who may be near the end of life, must make healthcare decisions in pursuit of multiple, potentially conflicting goals. For example, patients may choose aggressive, cancer-focused treatments in service of prolonging life. The decision to receive aggressive treatments, however, likely interferes with other goals, including symptom palliation and quality of life. Understanding how patients think about their life and treatment goals during the process of making healthcare decisions is important in order to ensure that patients receive care that is consistent with their values. Self-regulation theory is an empirically-supported theory of human behavior that explains decisions in terms of goals and goal-related thoughts. Currently, we are conducting a prospective, quantitative study among patients with advanced cancer examining the validity of self-regulation as a conceptual model for understanding end-of-life healthcare decisions. As part of this study, we have developed a novel, semi-structured goal interview to quantify the goal-related thoughts of patients. This proposal is for supplemental funds to conduct a qualitative analysis of audio-recordings of the goal interview in order to more fully describe patients' goals and goal-related thoughts, gain a deeper understanding of the interplay among goals, goal-related thoughts, and prognostic understanding, and to transform the goal interview into an intervention tool that can be studied in future randomized clinical trials. Ultimately, the objective is to develop an empirically-supported intervention tool that will assist patients and their healthcare providers in clarifying the patient's life and treatment goals in order to improve treatment decision-making near the end of life.
Pilot Testing and Validation of a Survey of Surrogate-Clinician Communication in the Hospital
October 1, 2011- September 30, 2012
As the population ages, a growing number of hospitalized older adults will require the assistance of family members and other surrogates to make medical decisions for them. Although there is evidence that good communication is important for decision making, there has been inadequate study of surrogate/clinician communication in the hospital. To better study this topic, we have drafted a new measure, the Surrogate/Clinician Hospital Communication Survey. This measure examines several elements of communication that we have identified in our earlier work to be especially important for decision making. In the current proposal, we plan to refine and pilot test this measure. We plan several steps including expert review, pilot testing with cognitive interviewing, and more extensive pilot testing with 200 surrogate decision makers from 2 hospitals in the Indianapolis area. We will also administer other well-validated measures of decision making quality, surrogate outcomes (such as distress and depression), and patient care outcomes (such as aggressiveness of care) and will examine the relationships between communication quality, decision making quality, and patient and surrogate outcomes. The findings from this pilot study will be used in the development of a communication intervention to improve decision making and outcomes for older hospitalized adults who cannot make their own decisions and their surrogate decision makers.
Paul Helft/ Shelley Johns
Feasibility and Acceptability of a Novel Web Portal to Enhance Legacy Building for Those with Advanced Cancer
November 1, 2011- October 31, 2012
More than half a million Americans are expected to die of cancer this year, many of whom will struggle with existential distress and concerns about their family members. Interventions that encourage end-of-life (EOL) legacy building and communication of relational messages of love and gratitude have been shown to have positive effects on both patient and caregiver outcomes. Patients with cancer participating in EOL legacy-building interventions such as Dignity Therapy (DT) have reported a heightened sense of purpose and preparation for death and reduced suffering and distress, while family members have reported moderated bereavement experiences. Despite this knowledge, there exists no standard or widely available approach for attending to a patient's EOL legacy-building needs. Therefore, an effective, affordable, user-friendly, and widely-available intervention for legacy building is needed. The objective of this application is to assess the feasibility, acceptability, and preliminary efficacy of a novel Internet-based application to assist patients with advanced cancer in the legacy-building process. For the current pilot study, 12 adults with incurable and advanced-stage solid malignancies (i.e., cancer of the breast, pancreas, colon, and lung) will be recruited through the IU Simon Cancer Center (IUSCC). Participants will be provided with brief instruction on how to use the website to create a meaningful legacy on their own that they can share with significant others. Patients will complete a number of baseline self-report measures, and will complete these same measures after creating their online legacy. We will also include several questions regarding acceptability of the web-based legacy-making application. Finally, qualitative interviews will be conducted with participants to get their suggestions for future improvements to the web portal. The proposed study will provide necessary pilot data to be used as part of a career development award application for Dr. Johns, who will continue this work using a rigorous design and larger sample to test the efficacy of the web-based legacy-making application.