Comparison of recruitment methodologies for clinical trials: Results from the time for living and caring (TLC) intervention study.

BACKGROUND: Recruiting participants for research studies is a critical yet challenging task. Community-engaged recruitment strategies have gained prominence as effective means to engage diverse populations and ensure the representativeness of study samples. This case study aims to investigate the cost and effectiveness of various recruitment methods in enhancing research participation. METHODS: A comparative approach was employed to assess the outcomes of five different recruitment strategies used in the Time for Living & Caring (TLC) research study. Data on recruitment success, participant demographics, and retention rates were collected and analyzed using descriptive statistics, including ANOVA and Chi-squares, to statistically compare the outcomes associated with 5 different recruitment methodologies. The recruitment methodologies included two community-engaged strategies (community partner referral and community-based recruiters), a clinical database, social media, and word-of-mouth referral. CONCLUSION: The meta-data used to build this methodological case study describe different recruitment methodologies that may be used for clinical trials. This data-driven evaluation provides examples and considerations for researchers when developing budgets and proposals for future clinical trials. The primary finding is that there are tradeoffs in terms of cost, time, labor, and ultimately the representativeness of the sample, based on the type of recruitment methodology chosen.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis.

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

Iterative Review and Revision of the Enhancing Active Caregiver Training (EnACT) Intervention.

Interventions that actively engage dementia caregivers show promise in reducing the negative outcomes of caregiving but lack optimization and systematic testing. The purpose of this manuscript is to describe an iterative process developed to refine an intervention to enhance active engagement. A three-stage review process with content experts was developed to refine activities in preparation for focus group feedback and pilot testing. We identified caregiving vignettes, reorganized engagement techniques, and optimized focus group activities for online delivery to promote caregiver access and safety. The framework developed from this process is included, along with a template to guide intervention refinement.

Preparing for the Future While Living in the Present: Older Adults' Experiences Creating a Legacy of Values.

BACKGROUND AND OBJECTIVES: A legacy of values (e.g., legacy letter) is a nonlegal way to intentionally communicate intangible assets (e.g., values, life lessons, and emotional and supportive instruction) with others. There is scant research on legacy creation outside of a palliative care context, and no studies have explored the experiences of community-dwelling older adults creating a legacy of values. RESEARCH DESIGN AND METHODS: As part of an exploratory sequential mixed methods study, we conducted semistructured interviews with older adults (N = 16) who had previously created a legacy of values. We analyzed transcribed interviews using an interpretive descriptive approach. We iteratively coded interviews deductively with sensitizing concepts identified in the literature (existential well-being, end-of-life preparation and completion, generativity, and resilience), and inductively, based on participants' descriptions. Codes were categorized by patterns of motivations, content, outcomes, and meaning, and thematically summarized. RESULTS: We conceptualized the overall experience of creating a legacy of values as Preparing for the Future While Living in the Present and identified 4 themes: Preserving the Intangible for You and for Me, Sharing What I Want You to Know, Obtaining Peace through Reflection and Preparation, and Living into a Continuing Legacy. Participants attained peace, realized their life was not complete, and were challenged to live intentionally through legacy creation. DISCUSSION AND IMPLICATIONS: Creating a legacy of values may concurrently prepare older adults for the end of life and the remainder of life. These findings offer insight into a generative act that can promote intentional living among older adults.

Leaving a lasting legacy: A scoping review of ethical wills.

OBJECTIVES: Palliative care guidelines recommend an interdisciplinary approach to address patients' awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will. METHODS: We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation. RESULTS: Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality. SIGNIFICANCE OF RESULTS: Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

Treatment decision conversations, symptoms, and functional status in older adults with advanced cancer: An exploratory study utilizing mixed methods.

INTRODUCTION: Adults 65 years of age or older with metastatic cancer face complicated treatment decisions. Few studies have explored the process with oncology clinicians during clinic encounters. Our exploratory study evaluated whether symptom burden or functional status impacted treatment decision conversations between older adults, caregivers, and oncology clinicians in a single National Cancer Institute within the Mountain West region. MATERIALS AND METHODS: We conducted an observational, convergent mixed methods longitudinal study between November 2019 and January 2021; participants were followed for six months. The MD Anderson Symptom Inventory (MDASI) and Katz Index of Independence in Activities of Daily Living (ADL) were administered prior to clinical encounter. Ambulatory clinic encounters were audio recorded, transcribed, and analyzed. Nineteen older adults with a metastatic cancer diagnosis or a relapsed refractory hematologic malignancy were approached to achieve a sample of fifteen participants. The main outcome of interest was the number and quality of treatment decision making conversations, defined broadly and encompassing any interaction between the participant and oncology provider that involved (a) an issue or concern (e.g., symptoms, quality of life) brought up by anyone in the room during the clinical encounter, (b) a clinician addressing the concern, or (c) the patient or caregiver making a decision that involved a discussion of their goals or treatment preferences. RESULTS: Nine men and six women with a mean age of 71.3 years (6.6; standard deviation [SD]) were enrolled, and four died while on study. Participants were followed from one to ten visits (mean 4.5; SD 2.8) over one to six months. Of the 67 analyzed encounters, seven encounter conversations (10%) were identified as involving any type of treatment decision discussion. The seven treatment decision conversations occurred with five participants, all male (although female participants made up 40% of the sample), and 63% of participants who reported severe symptoms on the MDASI were female. Severe symptoms or functional status did not impact treatment conversations. DISCUSSION: Our results suggest that older adults with incurable cancer and their oncology clinicians do not spontaneously engage in an assessment of costs and benefits to the patient, even in the setting of palliative treatment and significant symptom burden.

Me & My Wishes: Concordance of End-of-Life Preferences between Residents with Dementia, Family, and Staff.

Objective: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Design: Randomized wait-list control. Setting/Subjects: Assisted living and nursing home residents in the United States, and their family members and caregivers. Measurements: Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. Results: Thirty-six resident videos were shared with family (N = 50) and staff (N = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, p < 0.001; staff: Beta = 0.35, p < 0.001). Conclusion: Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.

Couples Managing Type 1 Diabetes Using Diabetes Technology.

OBJECTIVE: Diabetes technology has improved the lives of people with diabetes (PWD), but there is little research on how insulin pumps and continuous glucose monitoring (CGM) affect couples' relationships. The purpose of this study was to examine how the use of diabetes technology affects couple interactions. METHODS: In a secondary data analysis, we used a multiple-method qualitative analysis, including a constant-comparison approach, to examine similarities and differences in couple interactions related to diabetes technology. PWD and their spouses were interviewed separately, using a semi-structured interview guide; the interviews primarily focused on how couples coped with type 1 diabetes. RESULTS: Participants (n = 134 couples) were using an insulin pump or CGM system. Average age was 44 ± 12.05 years for PWD and 44 ± 12.62 years for spouses. Couples' average length of relationship was 18 ± 12.50 years. Among the PWD, 54 used a pump only, 12 used CGM only, and 68 used both. Four main themes emerged: 1) diabetes technology facilitates shared diabetes management for couples, 2) diabetes technology facilitates spousal involvement in diabetes care, 3) diabetes technology is a source of relationship tension, and 4) diabetes technology causes positive/negative responses to sleep and alarms. CONCLUSION: Overall, couples perceived diabetes technology as having a positive effect on their relationship by increasing collaboration, promoting communication, and reducing diabetes burden and vigilance. Technology also was perceived to increase relationship tension, lifestyle inconveniences, and positive/negative responses regarding sleep and alarms. Involvement of spouses in diabetes technology education should be considered.

Development of a Long-Term Care Nurse Residency Program.

Nurses working in the long-term care (LTC) setting provide increasingly complex patient care, often without formal training on the specific needs of LTC patients, which can lead to burnout and high turnover rates. Nurse residency programs (NRPs) have been used effectively to orient novice RNs to their work setting, address transition-to-practice challenges, and promote retention, yet few LTC NRPs have been developed. The University of Utah Geriatric Education Consortium Geriatric Workforce Enhancement Program created an online LTC NRP to provide LTC nurses with the knowledge and skills to succeed in the LTC environment. RNs with <1 year of LTC experience were paired with experienced nurse mentors working within the same LTC facility. Synchronous and asynchronous curricular modules addressed leadership and communication, caring for older adult patients, quality improvement, and the LTC regulatory environment. A distance-based LTC NRP allows nurses flexibility in gaining gerontological nursing and leadership expertise that supports their professional goals. [Journal of Gerontological Nursing, 47(2), 37-43.].