Family Adaptability and Cohesion Influences on Positive Health Outcomes for Adolescent and Young Adults Undergoing Stem Cell Transplant for Cancer

poster abstractStem cell transplant (SCT) is a physically and emotionally difficult experience for adolescents/young adults (AYA) with cancer. AYA undergoing SCT require high levels of support to deal with illness-related distress. Family adaptability and cohesion are key protective factors influencing AYA outcomes throughout the SCT treatment process. Research on the influences of family protective factors on SCT outcomes for AYA is minimal. Purposes of this secondary analysis are to: 1) longitudinally examine the trajectory of family adaptability/cohesion and well-being; 2) describe AYA perceived family adaptability/cohesion and well-being at each of 3 three time points; 3) describe relationships between adaptability, cohesion and well-being from each time point to all other subsequent time points; 4) examine the longitudinal influence of adaptability/cohesion on well-being. The Haase Resilience in Illness Model (RIM) that guides this study identifies two risk factors and five protective factors that influence resilience and quality of life outcomes. The study design was longitudinal, descriptive. The sample included 53 AYA, 11 to 24 years of age, undergoing SCT for cancer at 11 pediatric or adult hospitals. AYA completed measures on a secure web-based server immediately prior to, during, and 90 days post-SCT. The RIM-related variables family adaptability, cohesion, and well-being were measured by the Family Adaptability and Cohesion Scale (FACES II) and Index of Well-Being (IWB). Descriptive and correlational statistics were used to analyze the data. We found that improvement in adaptability/cohesion is not strongly associated with improvement in well-being from T2 to T1 or T3 to T1, but is statistical significance when compared between T3 to T2. It is necessary to understand how family adaptability/cohesion influences AYA uncertainty and symptoms, coping, derived meaning of illness, and resilience, in order to develop effective family-focused interventions that foster resilience outcomes

Research in Palliative and End-of-Life Communication and Training (RESPECT) Center: Year 3 2012-2013

poster abstractThe mission of the Research in Palliative and End-of-Life Communication and Training (RESPECT) Center is to build a collaborative, interdisciplinary scientific community of researchers and clinicians to work together to advance the science of communication in palliative and end-of-life care across the lifespan. Center Goals: • Accelerate the development of innovative descriptive and intervention research trials relevant to communication and decision-making in children, adolescents, adults, and elders with serious and/or life-threatening illness • Develop new community partnerships for translational science to enhance palliative and end-of-life care research and practice • Create mentorship opportunities for developing scholars who will become the next generation of productive, passionate palliative and end-of-life care researchers The RESPECT Center is comprised of 19 faculty, 3 post-doctoral trainees and 3 staff members. Faculty meet twice a month to review and provide feedback to support the development of ideas and submission of research grants. In the 2011-2012 funding year, RESPECT Center faculty submitted 11 grants and received over $7.9 million dollars in funding, representing an increase of 21 % from the previous year. Additionally, faculty collaborated on the dissemination of findings and published XX articles on palliative and end-of-life care. The Center’s Visiting Scholar Series has hosted visits by 7 nationally recognized experts to consult with faculty and share their expertise with the community. On March 1, 2013, the RESPECT Center hosted a one-day statewide conference to bring together researchers and clinicians in Carmel, Indiana. The conference entitled, Translating Research into Best Practice: Improving Palliative and End-of-life Care, was attended by approximately 150 participants from 45 organizations. Finally, the RESPECT Center awarded 5 pilot study grants to help researchers develop critically important pilot data and continues to mentor developing scholars interested in the science of communication in palliative and end-of-life care

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste"

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs

Bereaved Parents’ Health Status During the First 6 Months After Their Child’s Death

Purpose: To examine bereaved parents’ physical, mental, and social health during the first 6 months after their child’s (<12 years) death from a life-threatening illness. Background and Significance: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents’ health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System–global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents’ health at 3 and 6 months after their child’s death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare parents’ scores to US general population scores. Findings: Mothers’ and fathers’ physical, mental, and sleep health scores were typically within 1 to 2 standard deviations of the population norms. However, their social health scores were as low as 3 standard deviations and all parents’ scores were below population norms. Four (25%) of the 16 parents had new diagnosis during the first 6 months. Based on the BSI-18, 3 parents had their scores above population cutoffs, which warranted a need for further clinical evaluation. Conclusions: Health data highlight the “at-risk” health status of bereaved parents. Further validation of these data is required to support the development of health promotion and disease prevention programs

Pilot testing a couples-focused intervention for mild cognitive impairment

The purpose of this pilot was to evaluate the acceptability, feasibility, and potential benefits of the multicomponent, Daily Enhancement of Meaningful Activity (DEMA) intervention, which was tailored to help couples facing mild cognitive impairment (MCI) work together to meet goals, remain engaged in meaningful activities, and adapt to changes over time. Using a single-group design, 10 individuals with MCI and their family caregivers were recruited to participate in the DEMA intervention over 6 biweekly sessions. Data were collected pre-and at 1 week and 3 months postintervention completion rates indicated the program and study procedures were well accepted. Qualitative and quantitative finding indicated positive trends in meaningful activity performance and maintenance of health-related outcomes, as well as high program satisfaction. The DEMA intervention is potentially promising but needs further testing in a randomized clinical trial

“The RESPECT (Research in Palliative and End-of-Life Communication and Training) Center”

poster abstractCommunication is crucial to decision-making and high-quality care for patients with serious illness, but there are significant gaps in communication among patients, families, and clinicians. The Research in Palliative and End-of-Life Communication and Training (RESPECT) Center was funded in July 2010 under the IUPUI Signature Center Initiative to advance the science of palliative and end-of-life communication. The mission of the RESPECT Center is to build a collaborative, interdisciplinary scientific community of researchers and clinicians to work together to advance the science of communication in palliative and end-of-life care across the lifespan. The Center capitalizes on the complementary and expanding expertise at IU to support the advancement of research on communication in populations with serious illness that is lifethreatening, debilitating, or terminal. The Center is working to achieve its mission through three primary activities. First, the Center convenes researchers with shared expertise to utilize the collective wisdom of the interdisciplinary group in grant development and submission. The RESPECT Center uses a peer review meeting model to provide a forum for students, trainees, and faculty to develop and refine their grant writing activities focused on palliative and end-of-life care from idea development to grant revision. Second, research development is augmented by funding opportunities for peerreviewed pilot studies. Pilot funding is designed to attract new researchers to this area of study and to facilitate the generation of pilot data for more experienced researchers who are carving a new path in the field. Finally, several outreach activities are being undertaken with the goal of fostering new partnerships for translational science. The RESPECT Visiting Scholar series brings in external experts to present as part of a conference series and to meet with research faculty, clinicians, and administration to discuss issues related to advancing palliative and endof-life care research at IU. Additionally, a city-wide conference will be convened in year 3 to bring together members of the health care professional community with an interest in evidencebased practice in palliative and end-of-life care. The long-term goal of the RESPECT Center is to secure funding to permit the continued operation and expansion of Center activities

The resilience in illness model, part 1: exploratory evaluation in adolescents and young adults with cancer

BACKGROUND: Resilience is a positive health outcome identified by the Committee on Future Direction for Behavioral and Social Sciences as a research priority for the National Institutes of Health. The Resilience in Illness Model (RIM) was developed from a series of qualitative and quantitative studies, to increase understanding of how positive health protective factors (ie, social integration, family environment, courageous coping, and derived meaning) may influence resilience outcomes. The RIM also includes 2 risk factors: illness-related distress and defensive coping. OBJECTIVE: The purpose of this 2-part article was to report on evaluation of the RIM for adolescents/young adults (AYAs) with cancer. Here, in part 1, our purpose was to describe the exploratory RIM evaluation, and in part 2 we describe the confirmatory RIM evaluation. METHODS: An exploratory evaluation of RIM was done using exploratory latent variable structural equation modeling with a combined sample from 2 studies of preadolescents and AYAs with cancer aged 10 to 26 years (n = 202). RESULTS: Results, including goodness-of-fit indices, support the RIM as a theory with a high level of explained variance for outcomes of resilience (67%) and self-transcendence (63%). Variance explained for proximal outcomes ranged from 18% to 76%. CONCLUSIONS: Findings indicate that, following confirmatory testing, the RIM may be a useful guide to developing targeted interventions that are grounded in the experiences of the AYAs. IMPLICATIONS FOR PRACTICE: Understanding of the AYA cancer experience to improve holistic care is increased

Ensuring Treatment Fidelity in a Multi-site Behavioral Intervention Study: Implementing NIH Behavior Change Consortium Recommendations in the SMART Trial

The Stories and Music for Adolescent/Young Adult Resilience during Transplant (SMART) study (R01NR008583; U10CA098543; U10CA095861) is an ongoing multi-site Children’s Oncology Group randomized clinical trial testing the efficacy of a therapeutic music video intervention for adolescents/young adults (11–24 years of age) with cancer undergoing stem cell transplant. Treatment fidelity strategies from our trial are consistent with the NIH Behavior Change Consortium Treatment Fidelity Workgroup (BCC) recommendations and provide a successful working model for treatment fidelity implementation in a large, multi-site behavioral intervention study. In this paper we summarize 20 specific treatment fidelity strategies used in the SMART trial and how these strategies correspond with NIH BCC recommendations in 5 specific areas: 1) study design, 2) training providers, 3) delivery of treatment, 4) receipt of treatment, and 5) enactment of treatment skills. Increased use and reporting of treatment fidelity procedures is essential in advancing the reliability and validity of behavioral intervention research. The SMART trial provides a strong model for the application of fidelity strategies to improve scientific findings and addresses the absence of published literature illustrating the application of BCC recommendations in behavioral intervention studies