Experiences Of Participants Research Articles

Music Meet Up online edition: The pivot to an online music therapy group for adolescents and young adults with cancer

The COVID-19 pandemic has heightened the unique emotional and social needs expressed by adolescents and young adults (AYAs) with cancer. To help address this, we adapted an in-person developmentally tailored group music therapy intervention to an online format. The purpose of this study was to gain preliminary data to explore the acceptability of the online version of the group. A qualitative descriptive approach was chosen to understand the experiences of program participants, who were patients at a tertiary cancer centre in Toronto, Canada. One-to-one semi-structured interviews were conducted with participants, and data was analysed using thematic analysis. A total of six interviews were completed, with five participants identifying as women. Ages ranged from 24-35, and various cancer types were represented. Overall, participants felt the online version of the program was beneficial. However, interviews pinpoint advantages and disadvantages with the online format. Delivering the program online enhanced accessibility but also created issues of disrupted/impaired “connectivity” between participants and the music. Online group psychosocial interventions, including music therapy, may continue to be offered long after the pandemic. These lessons could inform how other online music therapy interventions are delivered to AYAs between 18-39 years of age and beyond.

Decentralized clinical trials are better for the participants and for the planet: the case study of a double-blind randomized controlled trial in Singapore (PROMOTE study)

IntroductionNovel technologies have enabled the decentralization of many aspects of clinical trials, but little research has been done on the impact of these changes on the participant experience, trial operations, or the environment.MethodsA fully decentralized clinical trial conducted in Singapore is used as a case study to evaluate the operational outcomes, environmental impact (via life cycle assessment), and participants experience (qualitative interviews) of the decentralized model compared to a traditional study with in-person visits.ResultsThe decentralized study achieved high participant retention rates (97%) and high completion rates for clinical data, even for biological samples. Participants found the decentralized model to be convenient and safe, especially during the pandemic. Moreover, the decentralized model was found to be more environmentally friendly and less detrimental to human health compared to traditional face-to-face clinical trials, primarily by reducing participants’ use of cars for site visits.DiscussionWhile this study focused on the environmental impact, it is important to consider other factors such as participant safety, convenience, and data quality when evaluating the suitability of a decentralized clinical trial approach. Careful planning of data flow, database structure, and data protection measures is essential. This study contributes to improving the environmental footprint of clinical trials. Environmental sustainability should be among the factors that are evaluated when selecting trial models. Decentralized and hybrid clinical trials offer efficiency, effectiveness, and environmental benefits. Further research and adoption of these approaches are encouraged.

Effects of high-intensity training on jumping performance among athletes: a systematic review with meta-analysis

This review aims to conduct a meta-analysis of the impact of high-intensity training (HIT) on athlete jumping performance. As of May 2024, we conducted a comprehensive search on PubMed, Web of Science, SCOPUS, and EBSCOhost databases in accordance with the PRISMA guidelines. Use the PEDro scale to evaluate the methodological quality of the included study. Meta-analysis of random effects model calculations. Conduct subgroup analysis (participant age, gender, training experience, intervention length and frequency). 18 high-quality studies met the inclusion criteria, including 490 athletes aged between 6 and 27 years old. The results showed that high-intensity interval training (HIIT) has a moderate effect on athlete jumping performance (ES = 0.918), while high-intensity functional training (HIFT) has a small effect on athlete jumping performance (ES = 0.581). The sub analysis of moderating variables includes 19 datasets. Compared with the control group, HIT has a positive impact on the jumping performance of athletes. The training experience, age, gender, intervention frequency, and intervention length of participants did not have a significant impact on the jumping performance of athletes, indicating the applicability of HIT as a training method. However, more extensive exercise experiments are needed to obtain stronger evidence.

COVID-19 Impact On Black and Latina Women: Pregnancy and Parenting.

The coronavirus-19 (COVID-19) pandemic presented unique challenges for pregnant women and birthing individuals, particularly those from Black and Latino communities. Understanding the impact of the pandemic on their experiences is crucial for providing adequate support and care during vulnerable times. This research delves into the specific effects of COVID-19 on maternal stress and resilience. We conducted in-depth interviews with a subsample of 19 women from a larger study examining the effects of maternal stress and anxiety, racism, and resilience and coping on pregnancy among Black and Latina pregnant women in the San Francisco Bay Area, a diverse region where nearly two-thirds of residents are people of color. Using thematic analysis, we identified three dominant themes that illuminate the impact of the COVID-19 pandemic on participants' pregnancy, birth, and postpartum experiences. Firstly, the pandemic shifted participants' focus away from their pregnancy and birth experiences, compelling them to prioritize safety measures against COVID-19 infection. Secondly, the study highlighted the profound value of high-quality, supportive care from healthcare providers during the pandemic, which significantly impacted participants' well-being. Lastly, we uncovered various resilience-building strategies employed by participants to navigate the challenges of pregnancy and parenting during the pandemic. This research provides essential insights into the lived experiences of Black and Latina pregnant women in the San Francisco Bay Area during the COVID-19 pandemic. The findings underscore the need for targeted support and interventions to address the unique stressors faced by these communities. By understanding the personal lived experience of Black and Latina participants' pregnancy, birth, and postpartum during the pandemic, healthcare providers and policymakers can develop more tailored and effective approaches to assist and empower Black and Latina pregnant individuals.

Triple Top Line Thinking for Triple Bottom Line Performance: Reflections on Outcomes of CCTU Eco-Guesthouse Business Plan Development

Purpose: Using the case of a DAAD-sponsored Eco-Guesthouse project at Cape Coast Technical University, the study analysed the outcomes of a business plan development based on the reflective experiences of participants and stakeholders. Design/Methodology/Approach: The study was qualitative, following a phenomenological approach to inquiry. Structured interviews were used to collect data from a purposive sample of 12 participants and stakeholders. The data was analysed qualitatively using Constant Comparative Analysis (CCA). Findings: The study found that, for start-ups, Triple Top Line thinking allows a proactive strategic view of business. This influences the choice of business model, the approach to business planning and development, and consequently, the value placed on the outcomes of the process. The study concludes that project outcomes in the form of resulting new knowledge, skills acquisition, changes in attitudes, and the development and strengthening of new and existing relationships from a system perspective constitute a useful, albeit tacit and fuzzy construct for evaluating project performance beyond tangible outputs. Research Limitation: While the literature supports the number of participants and stakeholders (12) used for the study, the findings of such interview-based qualitative studies are often indicative, which limits the extent of generalisation. Practical Implication: This study can help us understand the value of business plan development for startups' potential success. Social Implication: The study shows that a TTL perspective of startups makes an integrated approach to business planning and development imperative and allows for interdisciplinary collaboration among stakeholders to achieve TBL performance. Originality/Value: The paper theoretically demonstrates the inextricable linkage between triple bottom line thinking and triple bottom line performance in achieving project success and the significant place of outcomes in evaluating project performance from a systems point of view.

Evaluating the impact of faculty development programs at the workplace by using reflective critique writing technique

BackgroundThe professional development of faculty members is essential for improving the quality of education. Faculty development programs play a very vital role in continued professional development of faculty. Reflective Critique writing is an important tool for evaluation of faculty development programs, as it provides opportunities for self-reflection, self-critique and self-awareness. The experience of Reflective Critique writing, needs to be explored in order to encourage the faculty to engage in this practice and pursue their personal & professional growth. Aim of study is to determine the effectiveness of Reflective Critique writing in improving the teaching skills of faculty members after a formal faculty development program & to explore their experience using reflective critique technique to improve their professional & personal life.MethodIt was a mixed method study and design used was Explanatory Sequential Design. Quantitative part is Quasi experimental studies and Qualitative part is Exploratory. Purposive sampling technique was used for Quantitative part (27 faculty members) & Convenience sampling technique (10 faculty members) for Qualitative part of the studies. Case based learning facilitation skills workshop was conducted as a part of faculty development program in which participants were also trained on writing Reflective Critique texts on the “what, so what & now what” model. Participants also went through pre & posttest of the workshop & wrote their first Reflective Critique text. First evaluation for seeing improvement in teaching skills, learning transfer & behavior changes with Reflective Critique writing was carried out after 3 months at workplace (round 1) & second evaluation on the same pattern was carried out after 6 months of workshop at workplace (round 2). Participants wrote 3 Reflective Critique texts in total. At the end of the study, participants experience of Reflective Critique writing was explored in depth by semi-structured interviews of 10 faculty members.ResultsResults included the grading of reflective capacity of participants on REFLECT rubric & comparison of pre & posttest results. REFLECT rubric grading showed that in 3rd Reflective Critique writing almost 80% of the participants became critical reflectors, improving from an initial 60% progress in first writing, showing the effectiveness of the training program & increased effectiveness of teaching skills, learning transfer & behavior change at workplace. Evaluation was taken up to level 3 of the Kirkpatrick model. Results of pre & posttest showed marked improvement in results with a significant p-value indicating the success of intervention. Hence the data analysis showed the improved teaching skills, enhanced learning transfer at workplace with a positive behavior change which clearly indicated the effectiveness of Reflective Critique in improving the teaching skills of the participants & behavior change at workplace as well as their personal & professional development. Participants experience of Reflective Critique writing was explored further in the qualitative part of the studies and results showed multiple themes including ongoing teaching skills, increased higher order thinking and making sense of experience. Participants labelled Reflective Critique as: The Game Changer.ConclusionReflective Critique writing enabled the participants to get a deeper critical evaluation of the faculty development program, which in return enhanced their overall performance at workplace.

“Part of the world again”: qualitative enquiry into community participation during inpatient rehabilitation and transition years following severe brain injury

ABSTRACT Purpose To understand the experience of community and social participation for people with severe ABI during inpatient rehabilitation and the transition years. Methods Constructivist grounded theory methodology informed participant recruitment and data analysis. Adults with ABI were recruited using purposive sampling and data collected via in-depth interviews. Results Thirteen adults with severe ABI participated, with average age of 36.7 yrs at the time of injury, 9.1 months length of stay of in inpatient rehabilitation, and 4 years post discharge from hospital at time of interviews. The core category developed from thematic analysis was ‘lack of focus on community and social participation.’ Additional categories included: restricted participation, a focus on impairment and function, acceptance and connection within the community, influence of family and delayed return to community participation. Conclusion Community and social participation are recognized as the goal of rehabilitation following ABI; however, experiences shared by participants revealed that community and social participation were not the focus of their rehabilitation. Implications for rehabilitation To support positive holistic outcomes, focus on community and social participation is required within the rehabilitation continuum, using participatory frameworks, contextual goal setting, transparent endorsement for community access and the provision of opportunities for meaningful experiences with family and friends.

Characteristics of refractory disease and persistent symptoms in inflammatory arthritis: Qualitative framework analysis of interviews with patients and health care professionals.

This study aims to explore patients' and clinicians' understanding and experiences of refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with inflammatory arthritis (IA), namely rheumatoid arthritis or polyarticular juvenile idiopathic arthritis from their perspectives through interviews and/or focus groups. A qualitative study was conducted, following a pragmatic epistemology approach with framework analysis employed. Semi-structured interviews or focus groups with IA patients (n = 25) and multi-disciplinary rheumatology HCPs (n = 32) were conducted at one time point to obtain participants respective understanding and experiences of managing RD/PPES, and its impact on the patient-professional relationship. Three key themes were identified from both patients and professionals' experiences of RD/PPES: (1) relevant treatment experiences, (2) symptoms (with or without inflammation) and (3) impact: physical, psychological and social. These themes included 28 specific categories that would be considered as components characterizing RD/PPES, most common to both patients and HCPs with six being patient-specific and only one HCP-specific. The specific biopsychosocial symptoms and impacts of RD/PPES pertain to pain, fatigue, stiffness, joint involvement and physical, psychological and social functioning and quality of life, covering disease-related distress, mobility and independence. Wider influential factors such as comorbidities, non-adherence, health/medication beliefs and behaviours and social support were also identified. Common persistent symptoms that have both mental and physical impact characterize RD/PPES in IA and therefore a more integrated holistic approach to treatment is needed from multi-disciplinary HCPs, including health psychologists.

Latine Patients’ Beliefs, Attitudes, and Experience With Psoriasis

In the US, Latine patients disproportionately experience severe psoriasis, limited access to care, and poor disease-related quality of life. However, little is known about psoriasis in this growing US population. To explore Latine patients' perception of their illness and their attitudes toward and experiences with the health care system, treatment, and research. In this qualitative study, a thematic analysis was performed of in-depth, semistructured interviews of 30 Latine adults with moderate to severe psoriasis at an outpatient dermatology clinic in an urban safety-net hospital. All patients included had psoriasis diagnosed by a dermatologist and were defined as having moderate to severe psoriasis if systemic treatment was offered at any time during their disease course. Interviews were held between July 7 and August 3, 2022. Data saturation was used to determine sample size. Interviews were conducted in English or Spanish, audio recorded, transcribed verbatim, and translated. Transcripts were then coded through an iterative process, and themes were identified through thematic analysis. Among 30 participants included, the mean (SD) age was 50 (11) years, 20 (67%) were male, and 22 (73%) preferred Spanish. Among 15 participants who disclosed their country of origin or ancestry, 7 (23%) were from Mexico; 4 (13%), Guatemala; 2 (7%), El Salvador; 1 (3%), Honduras; 1 (3%), Nicaragua; and 1 (3%), Peru. Six interrelated themes describing participant experiences were identified: (1) illness perception of psoriasis, (2) reliance on sociofamilial connections for medical decision-making, (3) impact of psoriasis on work life, (4) barriers to accessing quality dermatologic care, (5) receptiveness to prescription and nonprescription treatments, and (6) positive perception and interest toward research. The findings of this study highlight the impact of psoriasis on Latine individuals, the efforts made by this population to overcome health disparities, their positive perception toward biologic medications, and their interest in participating in biomedical research. Future investigations should assess educational interventions and further explore the preferences of Latine patients toward biologic medications and biomedical research.

An investigation of Google comments on experience museums in Türkiye

Experience museums, which have recently started to serve, offer different experiences to visitors by bringing technology and history together. Bringing a new perspective to museum activities, experience museums offer visitors an interactive and participatory experience. This study aims to analyze Google comments on experience museums in Turkey. For this purpose, the qualitative research technique was used. The study included 406 comments about Hagia Sophia History and Experience Museum, 217 comments regarding Ephesus Experience Museum, and 219 comments about IMM Kültür AŞ Digital Museum on Google until April 27, 2024. The data were analyzed using the qualitative analysis program MAXQDA. In light of the findings, codes were created positive and negative themes. It was determined that visitors were generally satisfied with the experience museums, and the most common complaint was about museum entrance fees.

Nurse practitioner and physician associate mentorship: Improving retention and employment experiences.

Clinician turnover is costly for health care organizations. A retention strategy for newly hired nurse practitioners (NPs) and physician associates (PAs) was needed at our organization. A quality improvement project was conducted to determine whether a mentorship program could improve retention and employment experiences of newly hired NPs and PAs. A one-to-one mentorship program was implemented for newly hired NPs and PAs. (a) Retention and productivity data were compared for mentee participants vs. nonparticipants. (b) Mentee and mentor participants completed two program evaluation surveys to examine the program's impact on their employment experiences. Sixty-eight mentee-mentor pairs completed their mentoring relationship during the first 3 years of the program. Retention was higher among mentee participants vs. nonparticipants during their first (96% vs. 85%, p = .0332) and second year of employment (83% vs. 65%, p = .0480). Productivity during the first year was similar for mentee participants and nonparticipants (38th percentile vs. 37th percentile, p = .84). Most participants (≥69%) believed the program improved onboarding, personal and professional growth, work environment, and NP and PA community connection. The mentorship program improved first- and second-year retention of newly hired NPs and PAs and employment experiences of program participants. By our estimates, the program helped retain 15 NPs and PAs who would have otherwise left the organization, yielding potential organizational savings of $1.29M-$1.72M. A mentorship program can be an effective retention strategy for reducing health care turnover and related costs.

Factors influencing women's and men's place of birth decisions in rural Western Highlands Province of Papua New Guinea: A qualitative descriptive study.

Evidence shows that birthing with a skilled birth provider improves maternal and neonatal health outcomes. However, whilst most women in the Western Highlands Province of Papua New Guinea seek skilled health care during pregnancy in a health facility, more than half give birth at home or in the village without a skilled birth provider. To explore the factors influencing women's and men's decisions about place of birth in rural Western Highlands Province of Papua New Guinea. A qualitative-descriptive study was conducted. Semi-structured, in-depth interviews were conducted with 20 participants (16 women who were pregnant or recently given birth and four men whose partners were pregnant or recently gave birth). Interviews were audio-recorded and transcribed verbatim. The data was thematically analysed. Three key themes associated with the place of birth decision factors were identified from the study findings: (1) health service accessibility and availability, (2) socio-cultural influences, and (3) previous maternity care experiences. Participant experiences influenced their choice of place of birth, resulting in many giving birth at home in their village without a skilled birth provider. Maternal and child health services need to be appropriately tailored to improve accessibility and meet the unmet needs of pregnant women in Papua New Guinea. Additionally, health education programs should address socio-cultural factors influencing the uptake of healthcare services, especially in rural areas where health disparities are more evident. Further research is required to explore health worker perspectives, patriarchal control, and respectful care regarding health service utilisation in this study context.

Horses are worthy of care: Horse sector participants’ attitudes towards animal sentience, welfare, and well-being

Abstract Organisations for which sentient animals are central to the business model need to demonstrate the safeguarding of animal welfare and well-being. This requires providing positive experiences for animals which is critical to maintaining the social licence to operate. A cross-sectional survey captured the attitudes of experienced horse sector participants regarding sentience, welfare and well-being. Almost all respondents (99.9%; n = 676/677), believed horses were sentient. Analysis of open-ended responses identified two themes: (1) Sentience is a pathway to understanding the mental state, welfare and well-being of horses; and (2) A moral obligation for humans to consider sentience. Respondents’ observations that horses reacted to stimuli and responded to their surroundings underpinned their belief that horses were sentient. Theme one related to respondents’ understanding of sentience and how sentience informed their interpretations of horse behaviours and the making of inferences regarding the equine mental state. Theme two related to a moral obligation believed to exist towards horses because humans manage the horses’ environment and need to consider the impact of their interactions with horses. These obligations were perceived as responsibilities to consider sentience when determining good welfare and well-being in horse activity settings, when interacting with horses and when training and competing with horses. The results suggested a sophisticated understanding of sentience existed among experienced horse sector participants, who recognised the sentient horse as worthy of care. We propose that leveraging experienced participants’ existing knowledge of sentience could support the implementation of the Five Domains model when updating organisational policies.

No impact of story context and avatar power on performance in a stop-signal game.

This study investigates the impact of gamification on response inhibition in a Stop-Signal Task (SST) and examines participants' gamification experience. The findings reveal that, after accounting for approach- and avoidance-motivation as well as impulsiveness, higher immersion is associated with impaired response inhibition. This effect could be attributed to a substantial decline in immersion between the first and second SST sessions. Despite intrinsic motivation and avatar identification not significantly predicting performance, both factors exhibited a decline across sessions, suggesting an overall diminished gaming experience in the second session. Alternatively, motivational variables as immersion and avatar identification might be detrimental to response inhibition, by shifting attention away from relevant task elements. Contrary to expectations, approach and avoidance narratives did not influence outcome variables or participant experience, while different avatars led to altered avatar identification, particularly favouring strong avatars. The declining motivation over time might stem from a lack of tangible goals within the gamified task, where narrative elements alone failed to induce sufficient goal-oriented motivation. These findings underscore the nuanced interplay between gamification elements, task complexity, and participants' expectations, emphasizing the need for carefully tailored gamification strategies in experimental designs.

Children and adolescents’ experiences of active participation in radiological examinations -a qualitative study

IntroductionChildren and adolescents have the right to participate in decisions about their health, including during radiological examinations. This study explores their participation experiences in this context. MethodsThis qualitative field study examines the importance of active participation from a Child-Centered Care perspective. Fostering active participation requires supportive structures that recognize each child as a unique social actor. Data was collected through observations and semi-structured interviews with 10 children and adolescents diagnosed with cystic fibrosis undergoing High Resolution Computed Tomography (CT) scans. Thematic analysis was performed on the transcribed data to identify central themes and patterns. ResultsParental presence and humor during CT scans helped reduce anxiety among participants. Key factors influencing participation included examination duration and pain, with many expressing a desire for greater involvement, especially during longer, more painful procedures. Few children reported experiencing active participation in hospital settings, particularly during CT scans. Younger and more expressive participants tended to have more opportunities for involvement. While most desired active participation during hospital visits and CT scans, they showed less interest in making treatment decisions. ConclusionThe radiographer's affirming and humorous approach is essential, as are considerations of children and adolescents' preferences regarding parental presence, examination duration, and pain management. Participation levels vary, and limited opportunities can undermine their rights. Children and adolescents express a strong desire for active participation in hospital and radiological settings but often feel insecure about making treatment decisions. Implications for practiceThis study highlights critical issues related to children and adolescents’ participation in radiological examinations, offering valuable insights for healthcare professionals to enhance participation, which is a fundamental right and crucial aspect of their care.

Integrating Balinese Gamelan Music with Sensorimotor Rhythm Intervention to Improve Brain Wave Synchrony and Language Processing in Autistic Children

The main objective of this study was to explore the effectiveness of combining Balinese Gamelan music with sensorimotor rhythm intervention in improving brain wave synchronization and language processing abilities in autistic children. This study used a qualitative method with an ethnographic case study approach to explore how the integration of Balinese gamelan music and sensorimotor rhythm intervention has the potential to affect brain wave synchronization and language development in autistic children. This study in-depth examines the experiences of autistic participants in the context of a culture-based intervention, which combines elements of traditional rhythm with sensorimotor therapy in a natural and authentic environment. Participants were selected through purposive sampling technique, consisting of parents of children with autism spectrum who experience limitations in language processing, aged between 5 and 15 years, who had been selected based on parental willingness and therapist recommendations. The number of participants was estimated at 25 children, sufficient for in-depth data collection and considering the variability of responses to the intervention. This study shows that the integration of Balinese gamelan music with sensorimotor rhythm intervention has the potential to improve motor synchronization, focus ability, emotional engagement, and language processing in autistic children. This intervention was also able to create a positive atmosphere that supported children's engagement in a structured musical environment. In addition, preliminary data from EEG suggests that gamelan rhythms may help create more regular brainwave synchronization, although these findings require further research to confirm. Overall, the results of this study provide new insights into the role of traditional music in supporting sensorimotor and cognitive development in children on the autism spectrum, especially in unique cultural contexts.

Structuring Innovation Activities in Moroccan Public Universities: Proposal of a Procedures Manual

In a context marked by the growing need for innovation and knowledge transfer within Moroccan universities, this article presents the development of a procedure manual aimed at guiding and optimizing the functioning of university innovation structures. The primary objective is to support the development of scientific research and innovation within these institutions, in alignment with "PACTE ESRI 2030," a national plan designed to transform the ecosystem of higher education and scientific research in Morocco. The procedures manual developed is the result of an empirical approach based on the practical experience of active participants within various segments of the innovation structures at the studied universities and the outcomes of questionnaires completed by key stakeholders involved in technological monitoring, invention disclosure, the maturation process, and technology transfer. This approach enabled the capitalization of the lived experiences and acquired knowledge of these actors, leading to the creation of a procedural guide that is both pragmatic and tailored to the specific realities of university innovation ecosystems. The aim is to optimize current practices and encourage more efficient and harmonized management of research and technological development activities. This contribution seeks to standardize key processes such as technological monitoring, invention disclosure, maturation procedures, and the stages of technology transfer. The main objective of this manual is to provide a structured and coherent framework for managing innovation activities, promoting modern governance, and ensuring transparent and effective resource management.

Caregiving Appraisals and Emotional Valence: Moderating Effects of Activity Participation.

The present study examines the extent to which a two-factor model of affect explains how caregiving appraisals experienced by caregivers influence their own well-being. We used data from three waves of Nation Study of Caregiving (NSOC) to conduct latent growth curve models with the time-varying predictors to investigate the effect of between-person (BP) and within-person (WP) caregiving appraisals on positive and negative affect. Furthermore, we simultaneously modeled WP differences in activity participation and affective experience with multilevel modeling. Then, we tested the moderating effect of activity participation in the association between WP caregiving appraisals and emotional valence. We found that BP and WP caregiving negative appraisal also contribute to caregiver positive affect similar to that of negative affect. Time-varying effects of negative appraisals and emotional valence are consistent with the two-factor model. Future longitudinal investigations could target WP and BP activity participation to alleviate caregiving cognitive appraisal among caregivers.

Experiences of tongue tie when breastfeeding twins: A qualitative study.

Tongue tie is an added complication when breastfeeding, but little is known about the role tongue tie might play when breastfeeding twins. Twins are much less likely to be breastfed than singleton babies due to added complications regarding pregnancy, birth and ongoing care. Tongue tie can cause breastfeeding barriers including poor latch, inefficient milk transfer and nipple pain. The aim of this study was to conduct an in-depth exploration of the experiences of mothers who have breastfeed twins with suspected or diagnosed tongue tie. Interview and qualitative survey data exploring the experience of breastfeeding twins and multiples were analysed with a focus on the experiences of participants reporting on suspected or diagnosed tongue tie. Data were analysed using reflexive thematic analysis. Three themes were developed. These were: 1) feeling disempowered by tongue tie denial; which illustrated the experience of dismissal by healthcare professionals, 2) the avoidable impact of diagnostic delay; highlighting the practical, physical and psychological impact of tongue tie, and 3) improvements following intervention; illustrating the immediate improvements experienced following frenotomy. Mothers who suspect tongue tie find themselves disempowered by denial of their experiences and needing to fight for intervention. Long delays lead to distress for both mother and child while intervention often leads to instant improvement. Improved healthcare professional training and healthcare policy changes are needed to improve tongue tie support and intervention for parents of twins and reduce the threat to mother and child health and wellbeing. Problem or Issue: Breastfeeding rates for twins are much lower than for singleton babies. For some infants tongue tie may be an additional barrier to breastfeeding success. Research with parents of singleton babies has shown that tongue tie can cause distress, frustration and physical pain for mothers who report dismissal by healthcare professionals and a need to fight for support. The voices of parents of infants with tongue tie who have successfully breastfed twins are presented. Like parents of singleton infants, they experienced diagnostic delays and psychological and physical impacts of tongue tie. Intervention was often sought privately when NHS support was lacking. Regardless of source, tongue tie intervention often led to immediate improvement highlighting how the added stresses and challenges created by tongue tie for twin parents could be prevented with appropriate support and intervention following birth.

Engaging young carers in public health research through online lyric writing workshops during the COVID-19 pandemic

ABSTRACT Understanding and effectively communicating population health research findings require engagement with the lived experiences of study participants, particularly when working with under-represented groups like young carers. This challenge was amplified during the COVID-19 lockdowns. To address this, we undertook a feasibility study, involving 46 young carers across 24 online creative lyric-writing workshops. Our approach combined narrative storytelling with rhythm and poetry (RAP) to co-produce creative outputs such as lyrics, aiming to engage participants with health and wellbeing research findings. Observations and interviews collected using bricolage methodology were used to capture professional and participant perspectives. The data were analysed using grounded theory. Our finding revealed that co-production and lyric-writing served as effective tools in communicating epidemiological data. We identified four key enablers in this process: connectedness, accomplishment, self-expression and societal engagement. This study underscores the potential of skills-based lyric-writing in enhancing science communication and public engagement with under-represented groups.