Participant and GP perspectives and experiences of screening for undiagnosed type 2 diabetes in community pharmacy during the Pharmacy Diabetes Screening Trial.

BACKGROUND: The Pharmacy Diabetes Screening Trial (PDST) evaluated three approaches to screening for undiagnosed type 2 diabetes mellitus (T2DM) in community pharmacy: (1) paper-based risk assessment (AUSDRISK) alone; and AUSDRISK followed by a point of care test if AUSDRISK ≥ 12; with either (2) HbA1c; or (3) small capillary blood glucose Test (scBGT). This paper reports the perspectives and experiences of the pharmacy screening service of two key stakeholder groups: screening participants and general practitioners (GPs). METHODS: All referred participants (n = 2242) received an online survey to determine the outcome of the referral, as well as their level of satisfaction with the service. In addition, a random sample of 2,989 (20%) of non-referred participants were surveyed to determine their overall experience and level of satisfaction with the service. GPs to whom participants were referred were contacted to establish if, since the date of the screening service, their patient had (1) been to see them; (2) had further tests performed (FBG, RBG, OGTT, HbA1c); or (3) been diagnosed with diabetes or prediabetes. Descriptive statistics were reported for quantitative data. Factors associated with visiting the GP following screening were assessed using multivariable logistic regression. Qualitative data were analysed using content analysis. RESULTS: Response rates 16% (n = 369) and 17% (n = 520) were achieved for the three-month referred and non-referred participant surveys, respectively. Over 90% of respondents were very positive about the screening service (n = 784/853) and would recommend it to a family member or friend (n = 784/853). Participants also reported making significant improvements in diet and exercise, because of the screening. Among referred respondents, those who received a POC test were twice as likely to visit their GP compared to those who received a risk assessment only (OR 2.11 95% CI 1.46-3.06). GPs (15.8% response rate, n = 57/361) indicated that the referral worked well and that recommendations for follow-up care by the pharmacist were appropriate. CONCLUSION: Opportunistic screening of individuals during routine encounters with the community pharmacy in a previously undiagnosed population has been shown to foster positive engagement with consumers and GPs, which may assist in reducing the burden of T2DM on the individual and the community.

Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.

BACKGROUND: Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as 'Vukuzazi' in rural KwaZulu-Natal, South Africa. METHODS: Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. RESULTS: Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. CONCLUSION: Participant's understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant's interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant's interest and therefore understanding of why their samples are being collected.

Perspectives of a new sport-specific Para Shooting classification system for athletes with vision impairment.

The International Paralympic Committee (IPC) and individual sports federations have established the need to develop evidence-based systems of classification for athletes with vision impairment (VI) that may differ depending on the visual demands of each sport. As a consequence, research has been conducted that led to a new classification system for athletes competing in VI shooting. The purpose of this study was to canvas the experiences of key stakeholders (athletes, coaches and classifiers) when the new system of classification was implemented. Twenty-eight participants (17 athletes, 7 coaches and 4 classifiers) completed a questionnaire to rate their experiences of the previous and new classification systems and were interviewed to gain richer insights into their opinions. It was apparent that the changes to the classification system were not adequately communicated to the athletes in particular, and that the classifiers may require a better understanding of the principles of evidence-based classification. The new system was perceived to be significantly more specific for VI shooting and intentional misrepresentation was observed to be significantly less likely than when using the old system. This research provides valuable insights into both the positive and negative experiences of key stakeholders experiencing change in a classification system.

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste".

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.

A qualitative exploration of participants' experiences of taking part in a walking programme: Perceived benefits, barriers, choices and use of intervention resources.

BACKGROUND: Adults with intellectual disabilities (ID) experience significant inequalities and tend to be more sedentary and less physically active than the wider population. Walking programmes are an effective way to increase physical activity (PA) but have not been used in studies involving adults with intellectual disabilities. METHOD: Nineteen adults with intellectual disabilities participated in semistructured interviews or focus groups exploring their experiences of taking part in a walking programme (Walk Well). Data were coded using thematic analysis. RESULTS: Four overarching themes emerged: perceived benefits of taking part in the programme, perceived drawbacks/ barriers, walking choices and using the Walk Well resources. While there was not a significant increase in walking for all, the participants reported positive experiences of taking part in the programme. Self-monitoring proved difficult for some, particularly reading the daily step count recorded on the pedometer and writing it in the diary. Carers also played an important role in facilitating and preventing behaviour change in adults with intellectual disabilities. CONCLUSION: Additional barriers prevent many adults with intellectual disabilities from participating in PA. Capturing participant experiences provides important information for designing effective and equitable health improvement programmes.

Participant experiences in a pilot study for methamphetamine withdrawal treatment: Implications for retention.

INTRODUCTION: There is little knowledge of the perspectives of people who use methamphetamine and have participated in clinical trials, and none for interventions not intended to address abstinence. A better understanding of these experiences could lead to more patient centred clinical trial design. This study seeks to understand the experiences of people who completed a clinical trial of lisdexamfetamine for the treatment of acute methamphetamine withdrawal. METHODS: Thematic analysis of open-ended, semi-structured interviews with eight people who participated in an inpatient clinical trial of lisdexamfetamine for acute methamphetamine withdrawal. Interviews were conducted between days 3 and 6 of admission to an inner-city Sydney hospital. RESULTS: Participants described how research procedures, the research setting, and the investigational product affected their experiences while enrolled in a clinical trial. Of particular importance to participants were transparent and low burden trial procedures, a welcoming trial environment, trusting relationships and effective communication, which were linked with the participants' subsequent decision to remain enrolled in the trial. DISCUSSION: The experiences of participants in this clinical trial can be distilled into four meta-themes: agency, caring-trust, safety, and communication. Participants spontaneously linked these experiences with a capacity to remain enrolled in the study. By considering the experiences of trial participants in clinical trial design, researchers can improve the experiences of future trial participants and facilitate their choice to remain enrolled in clinical trials.

Test-takers' perspectives on consumer genetic testing for hereditary cancer risk.

Purpose: With few exceptions, research on consumer genetic testing for hereditary cancer risk has focused on tests with limited predictive value and clinical utility. Our study advances the existing literature by exploring the experiences and behaviors of individuals who have taken modern consumer genetic tests for cancer susceptibility that, unlike earlier tests, screen for medically significant variants. Methods: We interviewed 30 individuals who had undergone consumer genetic testing for hereditary cancer risk between 2014 and 2019. We explored participants' pre-test sentiments (7 items), experiences receiving results (5 items), behavioral and health-related changes (6 items), and attitudes and beliefs (3 items). Data were analyzed for thematic content. Results: Most participants reported a personal (n = 6) and/or family history (n = 24) of cancer, which influenced their choice to pursue testing. Before testing, most participants did not consult with a physician (n = 25) or receive genetic counseling (n = 23). Nevertheless, the majority felt that they understood test-related information (n = 20) and their results (n = 20), though a considerable number reported experiencing negative emotions related to their results. Most also shared their results with family members (n = 27). Overall, participants' attitudes towards consumer genetic testing for cancer risk were predominantly positive (n = 23). Conclusion: This study offers new insights into how individuals use and perceive modern consumer genetic tests for hereditary cancer risk, focusing on their perceptions of the risks, benefits, and limitations of these services. Understanding test-takers' perspectives can potentially inform improvements aimed at ensuring that tests meet users' needs and deliver clinically valuable genetic risk assessments.

Experiences of individually tailored physical exercise in boys with Duchenne muscular dystrophy: a qualitative study.

INTRODUCTION: Excessive and insufficient physical exercise have both been associated with accelerated muscle function decline in boys with Duchenne Muscular Dystrophy (DMD), and optimal exercise remains unclear. OBJECTIVE: This study explored participants' experiences with a one-year training program. METHODS: Five semi-structured qualitative individual interviews and one focus group interview were conducted and analyzed using systematic text condensation. RESULTS: Participants included boys with DMD who participated in the intervention study (n = 10), their relatives and/or assistants (n = 7). Four main themes emerged: 1) the crucial role of motivation to maintain training routines, 2) benefiting from exercise, but with a need for balancing it, 3) time management challenges, and 4) the training as a social arena and meeting place. The participants emphasized the importance of experiencing progress, basic skills and enjoyable training. Parents were reassured knowing the appropriate exercise intensity and technique. The boys needed flexibility and support to find a balance between exercise and other activities and described benefits from sharing experiences with each other. CONCLUSION: Clinical guidelines for physical exercise in DMD should encompass customization of exercise interventions supporting motivational factors, balance and social interaction, and identify competing commitments. Successful training programs may enhance quality of life and functionality for these boys.

Participant experiences in a combination HIV cure-related trial with extended analytical treatment interruption in San Francisco, United States.

BACKGROUND: There is limited systematic information available about the perspectives of participants enrolled in intensive combination HIV cure-related trials inclusive of an extended analytical treatment interruption (ATI). OBJECTIVE: To assess and understand experiences of people with HIV involved in a combination HIV cure-related trial with an extended ATI. METHODS: The trial included five interventions and was followed by an ATI lasting up to 52 wk. From 2022 - 2023, we conducted in-depth interviews with study participants following their extended ATIs. Interviews were audio-recorded, transcribed, and analyzed via conventional thematic analysis. RESULTS: We interviewed seven participants. The majority were male, White, and non-Hispanic, with a median age of 37 years. Trust in the research team, scientific altruism and hope of becoming a post-intervention controller were key motivators for joining the trial. Interviewees reported being satisfied with their decision to participate in the trial and the extended ATI. Most recounted feelings of worry related to viral rebound during the ATI. Participants reported both defeat and relief with ART restart. Four faced challenges with protecting partners from HIV during their ATI, such as trying to find out if their partner(s) were using pre-exposure prophylaxis. CONCLUSIONS: Our findings demonstrate potential improvements for future ATI trial participant experiences, such as more robust resources for psychosocial support and partner protections. Dedicating greater effort to understanding participant ATI experiences can inform the design of future participant-centered HIV cure trial protocols.

Experiences using an online therapist-guided psychotherapy platform (OPTT) in correctional workers with depression, anxiety, and PTSD.

Introduction: Correctional workers (CWs) are frequently exposed to potentially traumatic events in the workplace, leading to an increased prevalence of mental health concerns. Online psychotherapy can address many of the barriers CWs face when seeking adequate mental health care. Despite their benefits, CWs' experience using digital mental health interventions is relatively unknown. This information could be valuable in developing enhanced care delivery to improve recruitment, retention, satisfaction, and treatment outcomes. Methods: This study investigated the experiences of a sample of CWs enrolled in a clinical trial evaluating the efficacy of the Online Psychotherapy Tool (OPTT) in this population. Participants were surveyed and interviewed to capture their opinions and feedback on the program. Survey analysis was conducted through Qualtrics statistical analysis software. The interview transcripts and open-ended survey questions were analyzed using thematic analysis methods in NVivo. Results: Participants (n=14) were cis-gender, predominantly white, with an average age of 38 years. While most respondents preferred in-person therapy, they also reported the benefits of the online psychotherapy program. Specifically, they expressed positive perceptions of the platform, the quality and interaction of their care provider, and the homework assignments and skills learned. Lack of motivation to complete weekly homework assignments was a frequently cited challenge. Unhelpful aspects of the therapy noted issues with the online format and frustration with certain program elements. Discussion: Participants expressed a positive outlook on the program, the platform, and treatment outcomes. A preference for in-person therapy was still indicated, demonstrating the need to focus on engagement in digital mental health interventions. In addition, the findings of this study shed light on the factors that can influence help-seeking in this population, including stigma in the work environment, demanding work schedules, workplace perceptions, and previous experiences accessing mental health services.

Participant experiences in HIV cure-directed trial with an extended analytical treatment interruption in Philadelphia, United States.

BACKGROUND: A feature of HIV cure trials is the need to interrupt treatment to test the efficacy of experimental interventions-a process known as analytical treatment interruptions (ATIs). OBJECTIVES: We report the experiences of participants after they completed an extended ATI. METHODS: From April to November 2022, we conducted post-ATI in-depth interviews with BEAT2 clinical trial (NCT03588715) participants who stopped ART while receiving an immunotherapy regimen. We used conventional content analysis to code the data. RESULTS: We conducted interviews with 11 Black/African American and three White/Caucasian participants (11 males, two females, and one transgender woman). The mean ATI was 38 weeks. Participants noted several significant experiences surrounding the interventions' side effects, ATI, and returning to medication. Some participants had positive experiences with their ATI. Other participants were nervous during the ATI. Rising viral loads led some to feel a sense of failure. Although trial experiences were heterogeneous, participants unanimously had positive interactions with the clinical trial staff which facilitated their retention in the trial. Participants shared their experiences with the trial, including changes in expectations, experiences with experimental interventions and procedures, compensation as a measure of respect, effort, transportation, and effects of COVID-19 during the trial. Based on these results, we provide considerations for the conduct of future HIV cure-directed clinical trials involving ATIs. CONCLUSIONS: Managing expectations, focusing on participants' contributions, and providing support to reduce feelings of having failed the research team and/or the HIV community following viral rebound should be part of HIV cure trial design. Discussing the mental health impact of rebound during consent, distinct from risk, is needed. Continued efforts to understand how people with HIV experience ATIs will improve future designs of HIV cure clinical trials.

Adolescents' and their parents' experiences of using a closed-loop system to manage type 1 diabetes in everyday life: qualitative study.

OBJECTIVES: Type 1 diabetes can have life-shattering consequences for adolescents and parents. A closed-loop system is a cutting-edge technology which automatically regulates glucose to reduce the burden of diabetes management. We explored adolescents' and parents' experiences of using this technology to understand how it affects their biographies and everyday lives. METHODS: In-depth interviews with 18 adolescents newly diagnosed with type 1 diabetes and 21 parents after ≥12 months experience using closed-loop technology. Data were analysed thematically. RESULTS: Participants reported very few disruptions to their lives when using a closed-loop. Reports of family conflict were minimal as the closed-loop enabled dietary flexibility and glucose levels to be checked effortlessly. Adolescents described doing 'normal' activities without worrying about high/low glucose, and parents reported allowing them to do so unsupervised because the closed-loop would regulate their glucose and keep them safe. Some adolescents expressed concerns about the visibility of components and, to avoid stigma, described curtailing activities such as swimming. Participants described how the closed-loop enabled adolescents to be in control of, or create distance from, diabetes. DISCUSSION: The closed-loop has life-enhancing consequences for both adolescents and parents and helps to reduce the biographical disruption of type 1 diabetes in this age group.

Experiences of a therapist-guided internet-delivered intervention for hazardous and harmful drinking. A qualitative study.

Background: Alcohol is the third leading risk factor for burden of disease in the world, causing significant health damage to the individual as well as costs to the surroundings and society as whole. Internet-delivered psychological interventions may help the individual to address alcohol consumption at an early stage before it develops into more serious problems. There is a need to investigate how participants experience internet-delivered interventions for hazardous and harmful drinking to optimize its usefulness in the target population. Methods: The present study was part of an open pre-post pilot trial to evaluate the feasibility and acceptability of a therapist-guided internet-delivered cognitive behavioural intervention for hazardous and harmful alcohol use. The aim was to investigate participants` experiences of the intervention and the ways in which the intervention helped them to address their alcohol consumption. Fifteen participants were selected from the open pre-post trial (n = 32), and semi-structured interviews were conducted immediately after participants had completed the treatment. The interviews were analysed using Thematic Analysis. Results: The results indicate that most of the participants found the intervention to be useful. Participants reported that the intervention made them more aware of the consequences of excessive drinking and gave them tools to cope with their alcohol consumption. Among the perceived advantages were the flexibility and anonymity of the intervention and therapist support. Participants called for more individualisation of the treatment to meet individual needs. Conclusions: A therapist-guided internet-delivered intervention for hazardous and harmful drinking can help individuals to address their alcohol consumption and give them tools to cope with their drinking. Future studies should examine the feasibility of tailoring modules to individual needs.

Participant experiences using novel home-based blood collection device for viral load testing in HIV cure trials with analytical treatment interruptions

Background: HIV cure-directed clinical trials using analytical treatment interruptions (ATIs) require participants to adhere to frequent monitoring visits for viral load tests. Novel viral load monitoring strategies are needed to decrease participant burden during ATIs.Objective: To examine acceptability of a novel home-based blood collection device for viral load testing in the context of two ongoing ATI trials in Philadelphia, PA, United States.Methods: From January 2021 to February 2022, participants completed three in-depth interviews via teleconference during their participation in an ATI: (1) within two weeks of enrollment in the device study, (2) approximately four weeks after beginning to use the device, and (3) within two weeks of the end of the ATI when ART was re-initiated. We used conventional content analysis to analyze the data.Results: We recruited 17 participants: 15 were cisgender males, 1 cisgender female, and 1 transgender woman. We observed an overall 87% success rate in drawing blood with the device from home collection and found overall high acceptance of the device. A mean of 91.5 devices per participant were used for home-based blood collection. Most PWH viewed the device as relatively convenient, painless, easy to use, and a simple solution to frequent blood draws. The main challenge encountered was the inability to completely fill up devices with blood in some cases. Most participants reported positive experiences with mailing blood samples and could see themselves using the device on a regular basis outside of ATIs.Conclusions: Our study showed participant valued the novel home-based peripheral blood collection for viral load testing in the context of ATI trials. More research will be necessary to optimize implementation of the device and to assess whether blood collected can reliably measure viral loads in the context of ATI trials.

Perceptions and experiences of a manual therapy trial: a qualitative study of people with moderate to severe COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) presents with physical, emotional and social difficulties that affect quality of life. Multimodal management includes both pharmacological and non-pharmacological strategies, and pulmonary rehabilitation (PR) plays an important role. Recent research has suggested that manual therapies may improve perceptions of dyspnea for people with COPD. METHODS: Focus group interviews were conducted as part of a mixed methods study to assess the feasibility of implementing a manual therapy technique-muscle energy technique (MET)-as an adjunct to PR for people with moderate to severe COPD. Focus group interviews were conducted to examine trial participants views of the intervention and the trial design. A thematic analysis was undertaken to explore the data. RESULTS: Twelve participants with moderate to severe COPD participated in three focus groups. Participants were motivated to participate in the trial to be proactive about their health. They perceived MET to be a gentle, comfortable form of stretching that allowed them to 'breathe easier' and prepared them for PR. A small number of participants reported mild muscular discomfort during MET, but this was short-lasting and was not bothersome. Participants enjoyed the one-on-one contact with researchers and learned more about their breathing while performing spirometric testing. Most participants wanted longer and more frequent MET sessions, and some requested 'homework' stretching exercises. CONCLUSIONS: The findings of this study show that a manual therapy intervention was received well by participants in a clinical trial setting. A small number of participants reported mild musculoskeletal discomfort in relation to the MET treatment. Participant preferences for additional and longer treatment sessions should be carefully considered against available resources in future clinical trials. TRIAL REGISTRATION: ANZCTR, ACTRN12618000801213. Registered 11 May 2018 - Retrospectively registered. http://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374643&isReview=true.

Pharmacist-led cardiovascular risk prevention in Western Canada: a qualitative study.

OBJECTIVES: Preventing cardiovascular diseases (CVD) is a public health and policy priority, including for employers. A novel CVD risk management programme that included medication management was delivered by pharmacists to employees of a Canadian university. This qualitative study describes the experiences and perceptions of participants who received individual health consultations in this programme. METHODS: A qualitative study design using free-text responses was adopted. Data (5658 words) came from evaluation surveys completed by 119 programme participants were iteratively coded and thematically analysed. KEY FINDINGS: We identified four themes characterising participant experiences of pharmacist-led CVD prevention. Theme one was labelled self-efficacy because personalised health information and advice on CVD risk factor management empowered participants to make improvements for their health. Participants expressed a range of positive responses about the longer consultations, supportive communication and safe setting of their pharmacist-led encounters; hence, Theme two is labelled pharmacists' interpersonal skills. The wider context of the programme included a number of enabling factors (Theme three) that either supported or limited participant engagement in the programme. A number of changes to behaviour and health measures were identified and participant suggestions to expand and continue the programme further contributed to perceptions of positive programme impact (Theme four). CONCLUSIONS: This study raises questions about how external resources and broader determinants might enable, or hinder, future programme success and sustainability. It also highlights the need for greater understanding and communication of the importance of primary prevention and the role of pharmacists in CVD risk reduction and workplace health promotion.

Participant Experiences in a Human Biomonitoring Study: Follow-Up Interviews with Participants of the Flemish Environment and Health Study.

Communicating individual human biomonitoring results to study participants has been the subject of debate for some time. This debate is dominated by ethical considerations from a researchers' perspective on whether or not to communicate, thereby overlooking more practice-based questions from a participants' perspective on what and how to communicate. We conducted a small scale follow-up study based on eleven face-to-face interviews with mothers participating in the third cycle of the Flemish Environment and Health Study (FLEHS III 2012-2015) to investigate how they experienced and interpreted individual biomonitoring results. Key findings indicate that respondents were generally satisfied with participating in the biomonitoring study, but the report-back process especially lacked contextualized information and interactive communication options to better comprehend and cope with personal results. These findings also argue in favor of a more tailored approach in which report-back methods, formats and content are diversified according to the type of results and the preferences of participants. A reflexive research practice with active engagement in follow-up research is crucial to improve participants' understanding and use of personal biomonitoring results.

"I'm empowered to look after myself" - Mindfulness as a way to manage chronic pain: An interpretative phenomenological analysis of participant experiences in Scotland.

BACKGROUND AND PRIMARY AIM: Chronic pain is a common problem that can impact on psychological and social wellbeing and activity levels. Despite pharmacological treatments, there is often a lack of improvement in physical and emotional functioning and health-related quality of life. Mindfulness meditation has become an increasingly popular self-management technique. The aim of the study was to explore the experiences of patients with chronic pain who took part in a mindfulness programme. METHODS: A mixed-methods feasibility study was carried out. Participants were aged 18 years or over with non-malignant chronic pain recruited from general medical practices in Fort William, Scotland. In 2013 participants undertook an eight-week mindfulness programme based on Mindfulness-Based Stress Reduction (MBSR) and were interviewed immediately post-programme and at eight-months' post-programme. Analysis of qualitative data involved Interpretative Phenomenological Analysis (IPA). FINDINGS: Thirty-four patients consented to take part in the study; twenty-four took part in the programme (14 attended four or more sessions, 10 attended one to three). Twenty-three were interviewed. Participant experiences of the programme were themed under: factors affecting experience (influence of earlier life events; the process of taking part in, and of relating to, the programme); and effects of the programme (impact on emotions, mental health, adverse events and a process of change). The process of change, resulting after better understanding the relationship between mindfulness and pain, involved learning to 'listen to the body', gaining a sense of community, learning to accept pain, and approaching life with more self-care, awareness, appreciation and empowerment. CONCLUSION: Participants reported a variety of experiences. For some, these included undergoing a process of change which may have supported them in living with their painful condition. This contributes to our understanding of how mindfulness could benefit people with chronic pain.

"From Victimhood to Warriors": Super-researchers' Insights Into Alzheimer's Disease Clinical Trial Participation Motivations.

BACKGROUND AND OBJECTIVES: Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer's disease. While barriers to participation are well documented, less is known about motivations for Alzheimer's disease clinical research participation. The purpose of this study was to explore what motivates individuals-who ultimately develop an ongoing connection to research and frequently participate-to engage and stay involved in Alzheimer's disease research. RESEARCH DESIGN AND METHODS: Individuals who had participated in multiple Alzheimer's disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research. FINDINGS: Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer's disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement. DISCUSSION AND IMPLICATIONS: These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.

Perspectives of individuals with sub-acute spinal cord injury after personalized adapted locomotor training.

PURPOSE: Locomotor training after incomplete spinal cord injury can improve walking function, and cardiovascular and muscle health. Participants' perspectives about locomotor training, however, have not been extensively studied. This study describes the experiences of individuals with sub-acute incomplete spinal cord injury who completed personalized adapted locomotor training; a locomotor-focused rehabilitation tailored to individual goals. Specifically, we examined how participation in this training impacted their lives and what challenges they encountered. MATERIALS AND METHODS: Following inpatient rehabilitation, seven participants completed 74-197 h of personalized adapted locomotor training. Using conventional content analysis, themes were identified from post-training interviews. Trustworthiness was enhanced through analysis trials, verbatim quotes, and triangulation. RESULTS: Three themes emerged: motives for participating, perceived benefits, and perceived challenges. Beliefs that higher intensity leads to quicker recovery of prior function motivated participation. Physical and psychological health improvements, favorable training structure, and empowerment to self-manage their rehabilitation were perceived benefits. Neglect of other commitments, acquiring extra services to participate (e.g. accessible transportation), limited transferability to daily walking, and a rigid training structure were perceived challenges. Program recommendations were formed from the perceived challenges. CONCLUSIONS: Personalized adapted locomotor training was positively regarded by participants. Addressing the perceived challenges may improve the training experience. Implications for Rehabilitation Personalized adapted locomotor training (PALT) is a high-intensity locomotor therapy tailored to an individual's goals. The experiences of individuals with iSCI highlight the impact of PALT on physical and psychological well-being. PALT has the potential to improve physical functioning and facilitate transitions from inpatient rehabilitation to community living. Findings suggest the need for adaptation of PALT to suit the unique needs of each individual.