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BackgroundIt is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. ObjectiveThis paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. MethodsThis study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. ResultsThis study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. ConclusionsWith appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.

ObjectivesFirst-person storytelling (FPS) has the potential to engage patients in changing behavior differently than didactic education. We assessed the prevalence of FPS in health education interventions; whether published FPS research has shown improvements in attitudinal, knowledge, behavioral, or clinical outcomes; and whether randomized controlled trials (RCTs) including FPS have shown more effectiveness than non-FPS interventions.MethodsA scoping review of FPS studies published before October 2019 in five medical databases was conducted.Results22 out of 10,363 identified studies met eligibility criteria. FPS has been studied primarily in cancer, diabetes, and hypertension. Of the 12 RCTs, compared to controls, patients receiving FPS interventions improved attitudes (N = 6 studies) and knowledge (N = 1), improved health behaviors like quitting smoking (N = 6), and improved clinical outcomes like lowering A1C levels (N = 3). Of the 10 non-RCT studies, compared to baseline assessments, patients who received FPS interventions had improved knowledge (N = 1), attitudes (N = 3), clinical outcomes (N = 4), and improved health behaviors (N = 7).ConclusionWhile rarely used, FPS interventions can improve patient health attitudes and outcomes. Future research should expand FPS to new health areas and determine best practices for developing FPS interventions.Practice implicationsFPS may be particularly effective with low income patients and racial/ethnic minorities.

Background: Organ transplant lay caregivers perform an essential and complex role, but there is a paucity of comprehensive, accessible education regarding transplant caregiving. We sought to create a broad, multifaceted educational toolkit for transplant caregivers. Given the complexities of this population, we report on lessons learned by organising diverse stakeholder engagement to develop an educational resource covering the breadth and depth of organ transplantation. Approach: Following a call from organ transplant patients and caregivers, the American Society of Transplantation (AST) formed an Organ Transplant Caregiver Initiative with the aim to develop a comprehensive educational toolkit for transplant caregivers. The AST Organ Transplant Caregiver Toolkit was created through a shared, multi‐step process involving transplant professionals and caregivers, who formed an education subcommittee to develop and refine content domains. The caregiver toolkit was reviewed with relevant external stakeholders and through an internal organisational review process. Evaluation: Lessons learned included seeking guidance from others with experience creating similar resources, flexibility in project development, creativity in engaging stakeholders and routine communication between all entities involved. Insights gained contributed to the caregiver toolkit completion despite project challenges. Implications: The AST Organ Transplant Caregiver Toolkit can be utilised by health care professionals to educate and counsel transplant patients and caregivers. Lessons learned from the development of the caregiver toolkit can provide guidance to health care professionals and clinical teachers for the development of future education resources. [ABSTRACT FROM AUTHOR]

The research on college student suicide is discussed, with emphasis on variability in base rates, the operating assumptions regarding reported base rates, and methodological difficulties in studying suicide. Variability in suicide among schools and among different types of students is examined, and the effects of changing demographics and cultural influences on rates and patterns of college student suicide and suicidality are reviewed. Recommendations for therapists and others promoting mental health on campus are made, suggestions for future research are outlined, and the need for required reporting of suicide statistics is asserted.

Solid organ transplant candidates who display alexithymia tend to report psychological distress with some displaying symptoms associated with depression which in turn has a negative impact on their quality of life. This study sought to examine the mediating role of depression on the relationship between alexithymia and physical and psychological quality of life. The sample comprised 707 patients who were under consideration for solid organ transplantation. Mediation models were used to examine the proposed hypotheses, specifically that alexithymia would predict quality of life, and that depression would mediate the relationship between alexithymia and physical and psychological quality of life. Findings revealed that alexithymia predicted both physical and psychological quality of life. Depression scores partially mediated the relationship between alexithymia and both physical and psychological quality of life. Transplant candidates with higher levels of alexithymia who report poor physical and psychological quality of life may be at increased risk for depression. Results highlight the need to assess alexithymia within this unique patient population, who may understate symptoms of depression due to attempts at positive impression management. [ABSTRACT FROM AUTHOR]

Using a cross-sectional design, we examined coping stages (Kübler-Ross) among patients with end-stage renal disease at nephrology practices incorporating professional social workers as patient navigators, providing person-centered education and support (N = 420). We evaluated associations with behavioral counseling constructs (assess–advise–agree–assist–arrange). Coping stages comprised denial = 35.24 percent, acceptance = 24.05 percent, depression = 21.43 percent, bargaining = 12.86 percent, and anger = 6.43 percent. Compared to denial, other coping stages showed increased odds ratios for transplant referral agreement, transplant referral evaluations, understanding treatments, understanding donation procedures, plans to recruit donors, active donor recruitment, and potential living donor(s). Assessment of coping stages, and strategies to influence these, may be key factors in guiding patients to living donor kidney transplantation. [ABSTRACT FROM AUTHOR]

Importance: Although 1 in 4 head and neck cancer (HNC) survivors experience clinically significant body image distress (BID), a psychosocial morbidity that adversely affects quality of life, effective interventions for these patients are lacking., Objective: To evaluate the acceptability and preliminary efficacy of BRIGHT (Building a Renewed ImaGe after Head and neck cancer Treatment), a brief tele-cognitive behavioral therapy, at reducing BID among HNC survivors., Design, Setting, and Participants: This parallel-group pilot randomized clinical trial recruited adult HNC survivors with BID between August 13, 2020, and December 9, 2021, from the Medical University of South Carolina HNC clinic during a routine survivorship encounter. Data were analyzed from May 3 to June 16, 2022., Interventions: BRIGHT consisted of 5 weekly psychologist-led video tele-cognitive behavioral therapy sessions. Attention control (AC) consisted of dose- and delivery-matched survivorship education., Main Outcomes and Measures: Change in HNC-related BID was assessed using IMAGE-HN (Inventory to Measure and Assess imaGe disturbancE-Head and Neck), a validated patient-reported outcome (score range, 0-84, with higher scores indicating greater HNC-related BID). Clinical response rate was measured as the proportion of patients with a clinically meaningful change in IMAGE-HN scores., Results: Of the 44 HNC survivors with BID allocated to BRIGHT (n = 20) or AC (n = 24), the median (range) age was 63 (41-80) years, and 27 patients (61%) were female. Patients rated BRIGHT's acceptability highly (all metrics had a mean rating of ≥4.5/5), and 19 of 20 patients (95%) receiving BRIGHT were likely or highly likely to recommend it to other HNC survivors with BID. BRIGHT decreased HNC-related BID from baseline to 1 month postintervention relative to AC (mean model-based difference in change in IMAGE-HN score, -7.9 points; 90% CI, -15.9 to 0.0 points) and from baseline to 3 months postintervention relative to AC (mean model-based difference in change in IMAGE-HN score, -17.1 points; 90% CI, -25.6 to -8.6 points). At 3 months postintervention, the clinical response rate of BRIGHT was 6.6-fold higher than AC (model-based odds ratio, 6.6; 90% CI, 2.0-21.8). The improvement in HNC-related BID for BRIGHT vs AC at 3 months was clinically significant, and the effect size was large (Cohen d, -0.9; 90% CI, -1.4 to -0.4)., Conclusions and Relevance: In this pilot randomized clinical trial, BRIGHT was acceptable, may result in a clinically meaningful improvement in HNC-related BID, and showed a high clinical response rate. These promising preliminary data support conducting a large efficacy trial to establish BRIGHT as the first evidence-based treatment for HNC survivors with BID., Trial Registration: ClinicalTrials.gov Identifier: NCT03831100.

Importance: Body image-related distress (BID) is common among head and neck cancer (HNC) survivors and associated with significant morbidity. Risk factors for HNC-related BID remain poorly characterized because prior research has used outcome measures that fail to fully capture BID as experienced by HNC survivors., Objective: To assess the association of demographic and oncologic characteristics with HNC-related BID using the Inventory to Measure and Assess imaGe disturbancE-Head & Neck (IMAGE-HN), a validated, multidomain, patient-reported outcome measure of HNC-related BID., Design, Setting, and Participants: This cross-sectional study assessed 301 adult survivors of surgically managed HNC at 4 academic medical centers., Main Outcomes and Measures: The primary outcome measure was IMAGE-HN scores, for which higher scores reflect more severe HNC-related BID. Multivariable linear regression analyses were performed to evaluate the association of patient characteristics with IMAGE-HN global and 4 subdomain (other-oriented appearance concerns, personal dissatisfaction with appearance, distress with functional impairments, and social avoidance) scores., Results: Of the 301 participants (212 [70.4%] male; mean [SD] age, 65.3 [11.7] years), 181 (60.1%) underwent free flap reconstruction. Graduation from college (β = -9.6; 95% CI, -17.5 to -1.7) or graduate school (β = -12.6; 95% CI, -21.2 to -3.8) was associated with lower IMAGE-HN social avoidance scores compared with less than a high school education. Compared with paid work, unemployment was associated with higher IMAGE-HN other-oriented appearance (β = 10.7; 95% CI, 2.0-19.3), personal dissatisfaction with appearance (β = 12.5; 95% CI, 1.2-23.7), and global (β = 8.0; 95% CI, 0.6-15.4) scores. Compared with no reconstruction, free flap reconstruction was associated with higher IMAGE-HN global scores (β = 11.5; 95% CI, 7.9-15.0) and all subdomain scores (other-oriented appearance: β = 13.1; 95% CI, 8.6-17.6; personal dissatisfaction with appearance: β = 15.4; 95% CI, 10.0-20.7; distress with functional impairment: β = 12.8; 95% CI, 8.1-17.4; and social avoidance and isolation: β = 10.2; 95% CI, 5.8-14.6). Higher IMAGE-HN distress with functional impairment scores were found in those who received surgery and adjuvant radiation (β = 7.8; 95% CI, 2.9-12.7) or chemoradiotherapy (β = 6.5; 95% CI, 1.8-11.3) compared with surgery alone. The multivariable regression model accounted for a modest proportion of variance in IMAGE-HN global (R2 = 0.18) and subdomain scores (R2 = 0.20 for other-oriented appearance, 0.14 for personal dissatisfaction with appearance, 0.21 for distress with functional impairment, and 0.13 for social avoidance and isolation)., Conclusions and Relevance: In this cross-sectional study, factors associated with risk of HNC-related BID included free flap reconstruction, lower educational attainment, unemployment, and multiple treatment modalities. These characteristics explain a modest proportion of variance in IMAGE-HN scores, suggesting that other characteristics may be the major risk factors for HNC-related BID and should be explored in future studies.