Purpose: This article seeks to take the next step in examining the insights that nurses and other healthcare providers can derive from applying behavioral economic concepts to support genomic decision making. As genomic science continues to permeate clinical practice, nurses must continue to adapt practice to meet new challenges. Decisions associated with genomics are often not simple and dichotomous in nature. They can be complex and challenging for all involved. Design: This article offers an introduction to behavioral economics as a possible tool to help support patients’, families’, and caregivers’ decision making related to genomics.
Methods: Using current writings from nursing, ethics, behavioral economic, and other healthcare scholars, we review key concepts of behavioral economics and discuss their relevance to supporting genomic decision making.
Findings: Behavioral economic concepts—particularly relativity, deliberation, and choice architecture—are specifically examined as new ways to view the complexities of genomic decision making. Each concept is explored through patient decision making and clinical practice examples. This article also discusses next steps and practice implications for further development of the behavioral economic lens in nursing.
Conclusions: Behavioral economics provides valuable insight into the unique nature of genetic decision-making practices. Clinical Relevance: Nurses are often a source of information and support for patients during clinical decision making. This article seeks to offer behavioral economic concepts as a framework for understanding and examining the unique nature of genomic decision making. As genetic and genomic testing become more common in practice, it will continue to grow in importance for nurses to be able to support the autonomous decision making of patients, their families, and caregivers.
Introduction Practical educational interventions for palliative carers are needed. Current supports frequently rely on carers travelling to a central venue to receive education. A substantial gap therefore exists around determining how high-quality relevant information can be delivered nationally, with limited cost implications, using educational methods that are acceptable to carers in palliative care. This study seeks to design and assess feasibility and acceptability of a distance-learning approach to educating carers. Methods This is an embedded mixed-method feasibility and acceptability study. It embeds an unblinded 1-arm pilot test, with subsequent qualitative interviews which will be used to inform the assessment of the intervention's acceptability and feasibility. The theoretical framework is self-efficacy theory, whereby we seek to impact carers' beliefs in their ability to carry out and succeed in caring tasks and situations. The educational materials focused on pain and nutrition/hydration will be developed in phase 1 with former carers (n=8) providing input into the content and style of materials. The educational package privileges adult-learning styles, recognising and responding to the learner's context including their learning needs, prior knowledge and motivations for engaging in education. The materials will be tested with up to 24 current carers. Analysis Analysis will focus on determining recruitment processes for a full-scale study, data collection procedures/completion rates, queries directed to the hospice from carers involved in the feasibility work, mode of delivery and content of the materials. The primary outcome measure is self-efficacy, with other measures focused on caregiver preparedness and caregiving tasks, consequences and needs questionnaire. Adherence to educational components will also be collected and reported. Ethics and dissemination Ethical approval has been provided by the participating site, Calvary Healthcare, Canberra, reference 02-2016, and the Australian Catholic University. Results will be published in peer-reviewed journals, presented at conferences and a lay summary sent to participants. Trial registration number ACTRN12616000601437
by
Joseph E. Gaugler;
Tamara L. Statz;
Robyn W. Birkeland;
Katie W. Louwagie;
Colleen M. Peterson;
Rachel Zmora;
Ann Emery;
Hayley R. McCarron;
Kenneth Hepburn;
Carol J. Whitlatch;
Mary S. Mittelman;
David L. Roth
Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered).
This supplement describes the content, processes, and outcomes of the Research Priorities in Caregiving Summit convened by the Family Caregiving Institute (FCI) at the Betty Irene Moore School of Nursing at UC Davis in March 2018. As described in the editorial introduction and the supplement's four papers, the summit sought to integrate and cross-pollenate the already compendious work on family caregiving to describe ways forward in the field. Thought-provoking commissioned synthesizing papers on issues of heterogeneity and trajectories of caregiving and its cultural embeddedness and on the potential of technology to shape and enhance caregiving interventions set the stage for a highly disciplined, multistaged process that resulted in the drafting of a set of research themes and priorities that were later finalized by faculty at the FCI.
Background: Integrating family planning into postabortion and postpartum services can increase contraceptive use and decrease maternal and child death; however, little information exists on the monitoring and evaluation of such programs. This article draws on research completed by the EngenderHealth's AgirPF project in three urban areas of Togo on the extent to which monitoring and evaluation systems of health services, which operated within the AgirPF project area in Togo, captured integrated family planning services.
Methods: This mixed methods case study used 25 health facility assessments with health service record review in hospitals, large community clinics, a dispensary, and private clinics and 41 key informant interviews with health faculty, individuals working at reproductive health organizations, individuals involved in reproductive health policy and politics, health care workers, and health facility directors.
Results: The study found the reporting system for health care was labor intensive and involved multiple steps for health care workers. The system lacked a standardized method to record family planning services as part of other health care at the patient level, yet the Ministry of Health required integrated family planning services to be reported on district and partner organization reporting forms. Key informants suggested improving the system by using computer-based monitoring, streamlining the reporting process to include all necessary information at the patient level, and standardizing what information is needed for the Ministry of Health and partner organizations.
Conclusion: Future research should focus on assessing the best methods for recording integrated health services and task shifting of reporting. Recommendations for future policy and programming include consolidating data for reproductive health indicators, ensuring type of information needed is captured at all levels, and reducing provider workload for reporting.
Objective: Mild cognitive impairment, especially memory loss, is prevalent in patients with heart failure (HF) and contributes to poor clinical outcomes and higher mortality. Methods: This study evaluated a combined aerobic exercise and cognitive training (EX/CT) program on memory, executive function, attention, processing speed and reaction time compared to exercise only or a usual care attention control (UCAC) stretching and flexibility program. Participants completed a standardized neurocognitive battery at baseline, 3 months, and 6 months along with demographic, clinical, and functional capacity (6-minute walk test). A linear mixed model analysis was used with comorbidity as a covariate. Results: Sixty-nine participants were enrolled, the mean age was 61 ± 10 years, 54% were women, 55% were African American, and the mean left ventricular ejection fraction percentage was 35 ± 15. A significant group by time interaction for verbal memory was found at 3 months (F [2, 53] = 4.3, p = 0.018) but was not sustained at 6 months in the EX/CT group. Processing speed/attention differed across treatment groups between baseline and 6 months, but improvement occurred among UCAC participants. There were also significant group differences in the 6MWT distance occurring at 3 months (F [2, 52] = 3.5, p = 0.036); however, significant improvement was observed within the EX/CT group only. There were no significant differences in 6MWT in the other groups at 3 or 6 months. Conclusion: An EX/CT intervention was associated with improved memory in persons with HF and warrants further investigation in a larger trial. The relationship between functional capacity and cognitive function also needs further study.
Background: The African Health Professions Regulatory Collaborative (ARC) was launched in 2011 to support countries in East, Central, and Southern Africa to safely and sustainably expand HIV service delivery by nurses and midwives. While the World Health Organization recommended nurse initiated and managed antiretroviral therapy, many countries in this region had not updated their national regulations to ensure nurses and midwives were authorized and trained to provide essential HIV services. For four years, ARC awarded annual grants, convened regional meetings, and provided technical assistance to country teams of nursing and midwifery leaders to improve national regulations related to safe HIV service delivery. We examined the impact of the program on national regulations and the leadership and organizational capacity of country teams. Methods: Data was collected to quantify the level of participation in ARC by each country (number of grants received, number of regional meetings attended, and amount of technical assistance received). The level of participation was analyzed according to two primary outcome measures: 1) changes in national regulations and 2) improvements in leadership and organizational capacity of country teams. Changes in national regulations were defined as advancement of one "stage" on a capability maturity model; nursing and midwifery leadership and organizational capacity was measured by a group survey at the end of the program. Results: Seventeen countries participated in ARC between 2012 and 2016. Thirty-three grants were awarded; the majority addressed continuing professional development (20; 61%) and scopes of practice (6; 18%). Fourteen countries (representing approximately two-thirds of grants) progressed at least one stage on the capability maturity model. There were significant increases in all five domains of leadership and organizational capacity (p < 0.01). The number of grants (Kendall's tau = 0.56, p = 0.02), duration of technical assistance (Kendall's tau = 0.50, p = 0.03), and number of learning sessions attended (Kendall's tau = 0.46, p = 0.04) were significantly associated with improvements in in-country collaboration between nursing and midwifery organizations. Conclusions: The ARC program improved national nursing regulations in participating countries and increased reported leadership, organizational capacity, and collaboration among national nursing and midwifery organizations. These changes help ensure national policies and professional regulations underpin nurse initiated and managed treatment for people living with HIV.
People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote). Then in a 3-group RCT with 120 patient-surrogate dyads, we will evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT remote, and preliminary efficacy of SPIRIT compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. This Stage I research of SPIRIT will generate valuable insights regarding how to improve ACP for people with mild dementia who will progress to an advanced stage of the disease in the foreseeable future.
In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research.
In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is “broken.” Gaps in the health system can lead to people [as one caregiver passionately expressed] “falling between the cracks,” in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a “person of color” contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.