Multi-site Project Research Articles

Children of cancer patients: prevalence and predictors of emotional and behavioral problems.

Children of patients with cancer are at increased risk for developing emotional and behavioral problems. This study explored the prevalence and predictors of emotional and behavioral problems in Children of cancer patients in a multisite research project. A cross-sectional sample of N = 235 families was recruited simultaneously in 5 university medical centers. The participants, including parents (N = 402) and children (N = 324; ages 11-21 years) completed standardized questionnaires. Emotional and behavioral problems in children were measured by the Strengths and Difficulties Questionnaire (SDQ). On the basis of previous research and using a mixed-model approach, child-, parent-, family- and cancer-related variables were examined in addition to socioeconomic status as potential predictors. Descriptive statistics and a multiple random coefficient model were used in the analyses. Compared to norms, Children of cancer patients show increased mean levels of emotional and behavioral symptoms. The best predictor of emotional and behavioral problems from the perspectives of the child, the healthy parent, and the ill parent was general family dysfunction. Although family dysfunction was identified as the main predictor, the analysis revealed that the main part of variance was related to the individual child's level. The results indicate that screening for child mental health problems and family dysfunction in oncological and psychosocial treatment units can identify the families most in need of psychosocial support. Psychological services need to be both family-oriented and child-centered and focus on family dysfunction to prevent mental health problems in children.

Ivan A. Sag

Ivan A. Sag

Participant and Site Characteristics Related to Participant Retention in a Diabetes Prevention Translational Project

Using multilevel analysis, this study investigated participant and site characteristics associated with participant retention in a multisite diabetes prevention translational project among American Indian and Alaska Native (AI/AN) people. We analyzed data from the Special Diabetes Program for Indians Diabetes Prevention Program (SDPI-DP), a lifestyle intervention to prevent diabetes implemented in 36 AI/AN grantee sites. A total of 2,553 participants were recruited and started the intervention between January 1, 2006 and July 31, 2008. They were offered the 16-session Lifestyle Balance Curriculum from the Diabetes Prevention Program (DPP) in the first 16-24 weeks of intervention. Generalized estimating equation models and proportional hazards models with robust standard error estimates were used to evaluate the relationships of participant and site characteristics with retention. As of July 31, 2009, about 50 % of SDPI-DP participants were lost to follow-up. Those who were younger, male, with lower household income, no family support person, and more baseline chronic pain were at higher risk for both short-term and long-term retention failure (i.e., not completing all 16 DPP sessions and loss to follow-up, respectively). Sites with large user populations and younger staff had lower likelihood of retaining participants successfully. Other site characteristics related to higher risk for retention failure included staff rating of participant disinterest in SDPI-DP and barriers to participant transportation and child/elder care. Future translational initiatives need to pay attention to both participant- and site-level factors in order to maximize participant retention.

Income and children's behavioral functioning: a sequential mediation analysis.

Children from low-income households tend to exhibit higher levels of conduct problems and emotional problems, yet the pathways linking economic disadvantage to children's behavioral functioning are not well understood. This study uses data from the Early Steps Multisite (ESM) project (N = 731) to investigate associations between family income in early childhood and children's conduct problems and emotional problems in middle childhood. The study explores whether the associations from income to child conduct problems and emotional problems operate through maternal depressive symptoms and 3 family risk factors in early childhood-harsh parenting, parenting hassles, and chaos in the home environment. Results of a sequential mediation model revealed significant indirect effects of family income on children's conduct problems operating through maternal depressive symptoms and parenting hassles and indirect effects of family income on children's emotional problems operating through maternal depressive symptoms, chaos in the home environment, and parenting hassles. Implications of these findings for understanding processes through which income influences child functioning are discussed.

Research governance as a facilitator for ethical and timely research? Learning from the experience of a large government-funded multisite research project

The processes of research ethics and research governance are core to the conduct of research in health. Each aims to facilitate research that is both ethical and practical in order to produce new knowledge about the health system and improve the lives of those who use it. However, our experience has demonstrated that the process of obtaining ethical approval for a low-risk and low-resource research project was severely confounded by the multiple layers of research governance in operation at hospitals in Queensland (Qld) and New South Wales (NSW). We analysed our own experience of gaining research governance approval with the aim of improving governance processes for multicentre research projects. Our project aimed to interview and survey one person at each of 57 hospitals in NSW and 18 in Qld. We recorded and compared the steps, documents and time-frame related to research governance approval at each of these research sites. We found that the progress of our project was significantly impeded by the multiple steps related to research governance processes in hospitals. Research governance approval took an average of 160 days in NSW and 316 in Qld. There was inconsistency between hospitals regarding documentation and significant duplication of documentation already approved through ethical review processes. The necessity for separate research contracts for all Qld research sites also added to research delays. Based on our experiences we make recommendations about changes to research governance including clarification of responsibility, reform of areas of duplication and inconsistency, time limitations for approval and, in Qld, reform of financial and legal oversight.

Closing the app gap: From plan to project I

Our Closing the App Gap research project, examines the use of tablets, apps, and e-books in public libraries as a tool against summer reading loss in primary-grades children in underserved communities. Children in low-income families are less likely to meet important reading milestones, and they are particularly likely to suffer from summer reading loss, the setback of skills over the long summer vacation. As we already know, this loss can be addressed by summer reading programs in public libraries. Additionally, as digital media grows in importance, the resource disparity between affluent families and lower-income families becomes even more pronounced, with a digital divide effect that shapes the experience of emergent readers. One 2011 study indicated that 55% of children eight and younger from families earning $75k or more per year have access to a smartphone, iPod/phone, or tablet, while in families earning $30,000 or less, only 22% of children have similar access. With apps a growing part of the educational landscape, increased access is advantageous. This approach brings new tools in the fight against summer reading loss, enhances technological literacy, and mitigates the effect of the digital divide on children in lower-income families. Our poster will discuss the various aspects of our research, including: our greatest challenges, the creation of a model that can help other public libraries use apps and tablets with children, our proposed multi-site project that builds on what we've learned, and the potential ramifications of closing the digital divide and improving literacy for every child.

Patient-Centered Outcomes Research Institute (PCORI) multisite project to develop treatment decision aids for racial/ethnic minorities with lupus nephritis

Patient-Centered Outcomes Research Institute (PCORI) multisite project to develop treatment decision aids for racial/ethnic minorities with lupus nephritis

Disseminating an Evidence-Based Course to Teach Self-Management of Auditory Hallucinations

This multi-site project extended course dissemination of the 10-session Behavioral Management of Auditory Hallucinations Course to U.S. Department of Veterans Affairs (VA) mental health outpatient settings. The VA Quality Enhancement Research Initiative (QUERI) model and Rogers' theory of diffusion of innovations served as the theoretical framework. The course was taught to mental health professionals using teleconferencing, electronic media, and monthly conference calls across 24 VA mental health outpatient sites. Twenty course leaders provided feedback. One hundred percent reported being better able to communicate with patients about their voices and 96% reported improved understanding of the voice-hearing experience. Thirty-three course participants provided feedback. Ninety-four percent would recommend the course, 85% reported being better able to communicate with staff about their voices, and 66% reported being better able to manage their voices. Facilitators and barriers to course implementation are described.

The “Process” of Process Use

Process use refers to the ways in which stakeholders and/or evaluands change as a function of participating in evaluation activities. Although the concept of process use has been well discussed in the literature, exploration of methodological strategies for the measurement and assessment of process use has been limited. Typically, empirical research on process use has been limited to cross-sectional studies in single-site evaluation projects. In this method note, we present a longitudinal study of process use in a multisite evaluation project. Stakeholders’ changes in learning, attitudes, and behavior/action were assessed at three time points: prior to the onset of evaluation consultation; near the conclusion of a 1-year participatory consultation project; and 6–8 weeks after the termination of the project. Results showed that different domains of process use had differential development over time. Implications for measuring process use are discussed.

Primary Care Provider and Imaging Technician Satisfaction with a Teledermatology Project in Rural Veterans Health Administration Clinics

Assessment of a multisite rural teledermatology project between 2009 and 2012 in four Pacific Northwest states that trained primary care providers and imaging technicians in state-of-the-art techniques of telemedicine. In 2012, we assessed provider and imaging technician acceptability and satisfaction with a 32-item survey instrument based on the Patient Satisfaction Questionnaire developed by Ware et al. (Eval Program Plann 1983;6:247-63) and modified for telemedicine by Kraai et al. (J Card Fail 2011;17:684-690). Survey questions covered eight satisfaction domains: interpersonal manner, technical quality, accessibility, finances, efficacy, continuity, physical environment, and availability. Overall, 71% of the primary care providers and 94% of the imaging technicians reported being satisfied or extremely satisfied with the teledermatology project. Most (95%) providers found the continuing education classes on dermatology diagnosis and treatment topics useful, and 86% reported teledermatology was a good addition to regular patient services. Most (97%) of the imaging technicians were satisfied with the ability of teledermatology to improve the description of dermatology conditions using images of the lesions or rashes, and 91% were satisfied with the convenience of teledermatology. Challenges reported by both providers and imaging technicians include an increase in workload due to more patient visits related to dermatology care and limited information technology support. Given the Veterans Health Administration's initiatives to promote accessible health care to underserved Veterans using telehealth, these findings can inform future program designs for teledermatology.

Ethical Challenges Associated with the Development and Deployment of Brain Computer Interface Technology

Brain Computer Interface (BCI) technology offers potential for human augmentation in areas ranging from communication to home automation, leisure and gaming. This paper addresses ethical challenges associated with the wider scale deployment of BCI as an assistive technology by documenting issues associated with the development of non-invasive BCI technology. Laboratory testing is normally carried out with volunteers but further testing with subjects, who may be in vulnerable groups is often needed to improve system operation. BCI development is technically complex, sometimes requiring lengthy recording sessions to achieve the necessary personalisation of the paradigms, and this can present ethical challenges that vary depending on the subject group. The paper contributes to the on-going ethical discussion surrounding the deployment BCI outside the specialist laboratory and suggests some tentative guidelines for BCI research teams, appropriate to those deploying the technology, derived from experience on a multisite project. Any tension between deployment and technical progress must be managed by a formal process within a multidisciplinary consortium.

The VA Women’s Health Practice-Based Research Network: Amplifying Women Veterans’ Voices in VA Research

The VA Women’s Health Practice-Based Research Network: Amplifying Women Veterans’ Voices in VA Research

“There is still so much ahead of us”—Family functioning in families of palliative cancer patients.

Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15% and 36% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children.

Closing the Gap: A Needs Assessment of Medical Students and Handoff Training

Closing the Gap: A Needs Assessment of Medical Students and Handoff Training

Negotiation of gender responsibilities in resettled refugee populations through Relationship Enhancement training

Being uprooted, displaced, and resettled can produce great tension in refugee marriages. This paper details a technique to help refugees recognize and manage changes and threats to traditional gender roles after resettlement to western countries. A case study from a multisite psycho-educational marriage project illustrates the application of the Relationship Enhancement model with a Bhutanese couple. Through empathy and structured dialogue, the couple is coached to identify their core concerns about the changes in their lives and come up with mutually beneficial solutions. Focusing on the redistribution of each gender's prescribed responsibilities allows the clinician to respond to the cultural structuring of equitable division of labor while helping families to address new responsibilities in managing household duties, parenting, employment, and finances.

Facilitating advance care planning in community palliative care: conversation starters across the client journey

This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

Gender Differences in Baseline Health, Needs at Release, and Predictors of Care Engagement Among HIV-Positive Clients Leaving Jail

Women represent a significant and growing segment of jail detainees and persons living with HIV. This paper examines gender differences in health status, care and social service needs, and care engagement among jail releasees with HIV. Data are from 1,270 participants in the HRSA-funded Enhancing Linkages to HIV Primary Care and Social Services multisite demonstration project (EnhanceLink). Compared to men, more women reported homelessness, reduced adherence to prescribed ART, worse health, more severe substance use disorders, and more chronic health conditions. Men and women generally reported different needs post-release. As the number of expressed needs increased, women were more likely to drop out of care. Our findings suggest that effective and gender-specific strategies are required to identify needs, link services between jails and communities, and sustain retention of women with HIV in programs after release from criminal justice settings.

Implementation Science in the Real World: A Case Study of HIV Rapid Testing

Implementation science theories offer technical principles for carrying out activities designed to create or improve systems; however, such theories tend not to provide pragmatic or streamlined guidance when it comes to executing the actual implementation. We assembled a streamlined and comprehensive six-step theory-based implementation science model (ADAPTS - Assessment, Deliverables, Activate, Pretraining, Training, Sustainability) derived from the methods we have used to successfully execute multiple self-sustaining implementation efforts within the Veteran's Affairs Healthcare System. This paper provides a case study of our ADAPTS implementation science model, using a complex multisite HIV rapid testing implementation project as an exemplar.

Implementation of preventive mental health services for children of physically ill parents: experiences in seven European countries and health care systems

ObjectiveParental physical disease is a family issue, but families' minor children are seldom considered. The current study analyzed experiences with implementation of counseling for families with physically ill parents and minor children during a European multisite pilot project. MethodImplementation protocols of seven European partner centers collaborating in a joint research project were analyzed by Mayring's qualitative content analysis. Both an inductive approach and a deductive approach were chosen. Satisfaction of families and therapists was considered based on information from three partner centers. ResultsSatisfaction with counseling was rather high. Mentioned problems referred to aspects related to liaison partners, family-related aspects and physicians' concerns. Recommendations related to contacting families, liaising with other professions, implementing counseling together with a research project, and training. Results are integrated in the current dissemination literature. ConclusionSuccessful implementation was mostly determined by aspects of interdisciplinary cooperation and communication, perceived relative advantage and organizational premises. With regard to this kind of innovative child-centered family mental health services, top-down and bottom-up implementation strategies should be combined, and strategies of maintenance and sustainability should be considered from the very beginning.

Human Papillomavirus Genotypes in High-Grade Cervical Lesions in the United States

Two vaccines protect against human papillomaviruses (HPV) 16 and 18, which cause 70% of cervical cancer and 50% of cervical intraepithelial neoplasia 2/3 and adenocarcinoma in situ (CIN2+). Monitoring HPV types in CIN2+ may be used to assess HPV vaccine impact. As part of a multisite vaccine impact monitoring project (HPV-IMPACT), biopsy specimens used to diagnose CIN2+ were obtained for HPV DNA typing for women aged 18-39 years. Among 4,121 CIN2+ cases reported during 2008-2009 in 18- to 39-year-old women 3058 (74.2%) were tested; 96% were HPV DNA positive. HPV 16 was most common (49.1%), followed by HPV 31 (10.4%) and HPV 52 (9.7%). HPV 18 prevalence was 5.5% overall. Proportion of CIN2+ cases associated with HPV 16/18 was highest (56.3%) in 25- to 29-year-old women. HPV 16/18-associated lesions were less common in non-Hispanic blacks (41.9%) and Hispanics (46.3%) compared with non-Hispanic whites (59.1%) (P < .0001); the difference remained significant when adjusted for covariates. Compared to non-Hispanic whites, HPV 35 and 58 were significantly more common in non-Hispanic blacks (14.5% vs 4.2%; 12.3% vs 3.4%) and HPV 45 was higher in Hispanics (3.7% vs 1.5%). Age and racial/ethnic differences in HPV type distribution may have implications for vaccine impact and should be considered in monitoring trends.