Dissemination innovation: Using found poetry to return study results to patients and partners facing cancer.

Objective: Investigators should return study results to patients and families facing cancer to honor their research contributions. We created a found poem from transcripts of sexual and gender minority (SGM) couples facing cancer and returned it to study participants. Methods: Participants were randomized to receive the found poem in text, text and audio, audio, or video format, completed dissemination preferences and emotion questionnaires, and open-ended questions about their experience receiving the poem. Results: Participants preferred the format they received (n = 15, 75.0%), with text-only and combined text and audio formats evoking the greatest number of emotions (n = 13 each). The following categories and subcategories were identified: dyadic experiences (support, strength, depth, durability); dissemination preferences (timing, method); emotion (positive, negative); utility of the found poem (affirming; fostering reflection; not useful or inaccurate, and sense of community). SGM participants utilized positive emotion, affirming, and a sense of community with greater frequency than non-SGM participants. Conclusion: Innovative approaches to dissemination are acceptable; providing choices in how and when participants receive results may increase engagement; and SGM versus non-SGM groups may describe dyadic experiences differently. Innovation: Returning study results via found poetry is an innovative way to honor research participants facing cancer.

Advance Care Planning in the Context of Dementia: Defining Concordance.

BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

A Secondary Data Analysis of Technology Access as a Determinant of Health and Impediment in Social Needs Screening and Referral Processes.

Introduction: Although health systems increasingly integrate social needs screening and referrals into routine care, the effectiveness of these interventions and for whom they work remains unclear. Methods: Patients (N=4,608) seen in the emergency department were screened for social needs (e.g., transportation, housing, food) and offered an opportunity to receive outreach from community service specialists. Results: Among 453 patients with 1 or more social needs who requested assistance, outreach specialists connected with 95 (21.0%). Patients preferred to be contacted through their telephone (n=21, 60.2%), email (n=126, 28.0%), someone else's telephone (n=30, 6.7%), or first by telephone followed by email (n=23, 5.1%). Preferred contact method varied by patient age; endorsement of unmet transportation, housing, and utility needs; receipt of service outreach; and differences in emergency department utilization from the 6 months before the index visit to the 6 months after. Conclusions: Because limited access to a stable telephone or internet connection may prevent patients from connecting with resource referrals, social needs interventions may not benefit the most underserved populations who are at the highest risk of negative health outcomes. Future research should investigate whether communication preferences are an important indicator of needs and how to adapt social needs screening and referral processes so that they are more accessible to populations who may experience more frequent disruptions in methods utilized for digital communication.

Misalignment of social support in the social media posts of young adult cancer caregivers.

BACKGROUND: Compared with older cancer caregivers, young adult cancer caregivers (YACC) experience greater stress and depression during the first 6 months of caregiving. Social support can buffer the negative psychological effects associated with cancer caregiving. However, the misalignment of social support is associated with increased distress and worse emotional well-being. As YACC are more likely to utilize social media (SM) to seek social support compared with older cancer caregivers, they may be at greater risk of experiencing the misalignment of social support and related negative outcomes. OBJECTIVE: The purpose of this study was to identify ways that SM posts containing support for YACC's were potentially misaligned with the social support desired by YACC. METHODS: In this secondary analysis, cancer-related SM posts (N = 760) from 34 YACC's SM accounts were extracted for 6 months following the day of cancer diagnosis and imported into NVivo qualitative analysis software. Open coding of posts from four YACC identified a pattern of SM posts containing responses that may misalign with social support requests, and could be perceived as dismissive of YACC's emotions. Similar posts were grouped together, forming categories which were used to create a codebook and applied in coding all posts from the remaining 30 YACC. RESULTS: Content analysis identified three categories of social support misalignment originating from YACC's SM posts: supplications (n = 251, 33%), prevailing (n = 7, 10.1%), and consolations (n = 16, 2.1%). Supplications involved prayer or trust in god, prevailing posts compared dealing with cancer to a fight and suggested that the person would overcome cancer, and consolations used quotes, song lyrics, and or general reassurances in SM posts. CONCLUSIONS: Findings suggest that when YACC use SM during cancer experiences, they may interpret SM posts as social support or as misalignment of social support requests, which in turn can lead to either improved quality of life or additional distress (respectively). This study adds to the body of knowledge regarding how YACC use social media for social support and may inform future interventions designed to match YACC's desired support with support offered.

Posttraumatic growth and life course stress predict dyadic wellbeing among sexual and gender minority (SGM) and non-SGM couples facing cancer.

OBJECTIVE: This study examined: (1) Differences among sexual and gender minority (SGM) and non-SGM couples' life course stress, posttraumatic growth (PTG), individual, and dyadic wellbeing while facing cancer, (2) The predictive ability of PTG and life course stress on wellbeing for each dyad member, and (3) The predictive ability of dyad-level PTG and dyad-level life course stress on dyadic wellbeing. METHODS: Thirty SGM and 30 non-SGM dyads (N = 60) completed measures assessing demographics, life course stress, PTG, individual, and dyadic wellbeing. Regression and multilevel models tested predictive hypotheses. RESULTS: Participants were 56.3 years old on average (SD = 13.6) and were together for 24.2 (SD = 14.9) years. SGM participants reported greater life course stress and higher scores on the Depression, Anxiety, and Stress Scales (DASS-21) than non-SGM participants. A dyad members' higher PTG predicted their partners' higher DASS-21 score, dyad members' higher life course stress predicted their own higher DASS-21 score, and patients' higher life course stress predicted their partners' higher DASS-21 score. Greater dyadic PTG predicted greater dyadic wellbeing. CONCLUSIONS: SGM and non-SGM couples experience PTG equally despite SGM couples' greater life course stress and higher DASS-21 scores. Future research is needed to explore how PTG may affect individuals and couples differently.