BACKGROUND: Regulations designed to protect children participating in clinical research often restrict the availability of research data necessary for the development of age-specific therapies and drug dosing. Few data exist on how children experience participation in clinical research, and studies investigating young children undergoing an intensive medical treatment are lacking.
METHODS: Mixed methods with semi-structured interviews and DISCO-RC questionnaires were used to explore young children\'s and their parents\' experiences in clinical research participation during a kidney transplantation trajectory.
RESULTS: Nine children and their parents were interviewed. Children\'s median age at kidney transplantation was 4 years (IQR 4,7); age at interview was 7 years (IQR 6,9). Thematic content analysis of interviews revealed that most children were unaware of having participated in a study. Both children and their parents frequently were unaware whether procedures were standard care or research related. The additional burden attributed to study participation varied from not at all to heavy in combination with intensive medical treatment. Positive experiences included kind healthcare professionals, effective distraction techniques, educational aspects, contributing to science and extra check-ups. Most reported negative experiences were conflicting communication, spending much time in the hospital, missing school and suboptimal planning. Venous puncture was stressful for all children, whereas the discomfort of other procedures varied.
CONCLUSIONS: Pediatric clinical research design should focus on education and fun during research procedures, smart planning, consistent communication, close collaboration between clinical and research team and age appropriate distraction techniques.

UNASSIGNED: Obtain the perspectives of people with Parkinson\'s disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson\'s Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs.
UNASSIGNED: This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis.
UNASSIGNED: Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants\' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community.
UNASSIGNED: Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.
Health professionals need to inquire about an individual’s lived experience and employ strategies that center the person and personalizes their care while also integrating a coordinated interdisciplinary approach.An ideal model of care needs to integrate healthcare professionals as part of a larger care team that includes the person with Parkinson’s disease, and facilitates communication and planning with those team membersAn ideal model of care needs to integrate the larger community and seek to refer and build relationships with health professionals, organizations, and non-medical providers that will facilitate holistic care and advocate for people with Parkinson’s disease.

BACKGROUND: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place-of-care decisions, or the social organisation of those practices.
METHODS: As part of a wider study exploring optimal place-of-care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27-31 weeks gestation) cared for in a neonatal unit in the last 12 months.
RESULTS: We highlight parents\' labour-intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of \'involvement\'); (2) create continuity amid place-of-care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place-of-care decision-making and other efficiency-focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities.
CONCLUSIONS: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents\' workload, ability to participate in their baby\'s community of care and, ultimately, on the wellbeing and development of babies and their families.
UNASSIGNED: The OPTI-PREM study embedded parents\' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents\' experiences-as reported in this paper. The OPTI-PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss \'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life-changing research\' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co-author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation.

OBJECTIVE: This study explores student nurse anesthetists\' (SNAs) learning in the operating room during the coronavirus 2019 pandemic.
METHODS: An explorative design with semistructured interviews was used.
METHODS: Thirteen former SNAs and 12 clinical supervisors (8 of whom were included in the final analysis) were recruited from 6 counties in Sweden. Participants were purposively recruited. Inclusion criterion for former SNAs was having completed the nurse anesthesia program in the fall of 2020 to spring 2022; and for nurse anesthetists, those who have experience in supervising SNAs. The interviews were analyzed with thematic analysis.
RESULTS: The analysis identified one theme and five subthemes. The theme was that student learning was in focus despite an ongoing pandemic. Every learning situation contributed, and learning was triggered by the challenges. Both the SNAs and the supervisors exhibited resilience by accepting the situation and striving to do their absolute best in a nonoptimal learning environment. Over time, learning and supervision returned to normal.
CONCLUSIONS: During the pandemic, learning was ongoing despite stress, fear, and other challenging factors. Students\' learning appears to have been prioritized. The study highlights that nurse anesthetists and SNAs were resilient, resourceful, and able to find new ways to keep learning going.

BACKGROUND: Loneliness among nursing home residents is an increasing public health issue and consists of a combination of social, emotional, and existential loneliness. Cycling Without Age (CWA) involves taking nursing home residents on trishaw rides pedaled by trained volunteer \'pilots\'. This study aims to explore nursing home residents\' lived experiences of CWA and whether participation in CWA can mitigate experiences of loneliness.
METHODS: A qualitative phenomenological design was used. We conducted three observations and eight interviews: semi-structured interviews (n = 5) and informal interviews (n = 3) with passengers in CWA. Data were analyzed using reflexive thematic analysis.
RESULTS: Three themes were developed: 1. creating meaningful communities (related to the social mechanism connected to participating in CWA), 2. breaking the monotony of everyday life (related to how the passengers experience CWA as a meaningful activity), and 3. reconnecting to oneself (related to the meaningful experience the passengers have when they are connected to their local communities and reminiscence).
CONCLUSIONS: Taking part in CWA may mitigate loneliness, as passengers perceive it as being meaningful. These results strengthen the notion that participating in meaningful activities hold the potential to mitigate feelings of loneliness among nursing home residents.

UNASSIGNED: To design an educational intervention on sexual dysfunction for patients suffering from schizophrenia and diabetes based on patients\' and other relevant stakeholders\' preferences, and to offer transparency into the basic decision-making process behind a final design.
UNASSIGNED: We conducted a three-part investigation to explore theory, preferences, and feasibility based on literature searches and interviews with patients, healthcare professionals, heads of Assertive Community Treatment Centres and experts. Based on a content analysis of this material, a draft of the intervention was developed. The draft was quality-checked by involvement of stakeholder representatives and refined to its final design.
UNASSIGNED: The intervention evolved into having two components: One intervention for patients and one for healthcare professionals. In patient education, meeting peers and predictability were important factors. For healthcare professionals, daily clinical activities were prioritised.
UNASSIGNED: We present a framework for an educational intervention about sexual dysfunction, schizophrenia and diabetes targeting both patients and healthcare professionals.
UNASSIGNED: The transparency of the design process underlying the interventions allows for reproduction and eases further refinement, extension, and adjustment if implemented in other contexts.

BACKGROUND: Diabetes Self-Management Education and Support programs for people living with type 2 diabetes mellitus (T2DM) can increase glycemic control and reduce the risk of developing T2DM-related complications. However, the recorded uptake of these programs is low. Digital self-management interventions have the potential to overcome barriers associated with attendance at face-to-face sessions. Healthy Living is an evidence-based digital self-management intervention for people living with T2DM, based on the Healthy Living for People with Type 2 Diabetes (HeLP-Diabetes) intervention, which demonstrated effectiveness in a randomized controlled trial. NHS England has commissioned Healthy Living for national rollout into routine care. Healthy Living consists of web-based structured education and Tools components to help service users self-manage their condition, including setting goals. However, key changes were implemented during the national rollout that contrasted with the trial, including a lack of facilitated access from a health care professional and the omission of a moderated online support forum.
OBJECTIVE: This qualitative study aims to explore service users\' experiences of using Healthy Living early in the national rollout.
METHODS: A total of 19 participants were interviewed via telephone or a videoconferencing platform. Topics included users\' experiences and views of website components, their understanding of the intervention content, and the overall acceptability of Healthy Living. Transcripts were analyzed thematically using a framework approach.
RESULTS: Participants valued having trustworthy information that was easily accessible. The emotional management content resonated with the participants, prompting some to book an appointment with their general practitioners to discuss low mood. After completing the structured education, participants might have been encouraged to continue using the website if there was more interactivity (1) between the website and other resources and devices they were using for self-management, (2) with health professionals and services, and (3) with other people living with T2DM. There was consensus that the website was particularly useful for people who had been newly diagnosed with T2DM.
CONCLUSIONS: Digital Diabetes Self-Management Education and Support programs offering emotional aspects of self-management are addressing an unmet need. Primary care practices could consider offering Healthy Living to people as soon as they are diagnosed with T2DM. Participants suggested ways in which Healthy Living could increase interaction with the website to promote continued long-term use.

BACKGROUND: Pregnancy loss that includes both miscarriage and stillbirth cause significant psychological distress for women including anxiety, depression, and grief that persist long after physical recovery. This study focuses on the experiences of women in Pakistan, where pregnancy loss rates are high.
OBJECTIVE: To explore how pregnant women with anxiety symptoms and a history of pregnancy loss perceive their past experiences with the loss and how it affects overall well-being in their current pregnancy.
METHODS: Qualitative methods were used to explore the impact of previous pregnancy loss on the well-being of pregnant women.
METHODS: This qualitative research was embedded within a randomized control trial conducted in a tertiary care facility in Rawalpindi, Pakistan.
METHODS: Data were collected through in-depth interviews with 18 pregnant women who had experienced pregnancy loss. Data was analyzed using Framework Analysis.
RESULTS: The findings revealed several factors influencing participants\' well-being during pregnancies that resulted in a loss, such as unsupportive and abusive environments, unintended pregnancies, certain superstitious beliefs, poor health, and lack of access to quality healthcare. The study also highlighted the adverse impact of previous pregnancy loss on the ongoing pregnancy, including deterioration of physical and mental health and aversion of healthcare services. However, some participants reported positive changes in medical and self-care practices and an enhanced faith and reliance on destiny in their subsequent pregnancies.
CONCLUSIONS: Our study highlights the lasting impact of past pregnancy loss on subsequent pregnancies, affecting overall wellbeing and leading to healthcare avoidance. We identified persistent anxiety along with positive outcomes like enhanced medical practices and strengthened faith. Results suggest the need for culturally responsive interventions to support the overall well-being of anxious pregnant women with a history of pregnancy loss in resource-constrained settings.

UNASSIGNED: Social needs screening can help modify care delivery to meet patient needs and address non-medical barriers to optimal health. However, there is a need to understand how factors that exist at multiple levels of the healthcare ecosystem influence the collection of these data in primary care settings.
UNASSIGNED: We conducted 20 semi-structured interviews involving healthcare providers and primary care clinic staff who represented 16 primary care practices. Interviews focused on barriers and facilitators to awareness of and assistance for patients\' social needs in primary care settings in Maryland. The interviews were coded to abstract themes highlighting barriers and facilitators to conducting social needs screening. The themes were organized through an inductive approach using the socio-ecological model delineating individual-, clinic-, and system-level barriers and facilitators to identifying and addressing patients\' social needs.
UNASSIGNED: We identified several individual barriers to awareness, including patient stigma about verbalizing social needs, provider frustration at eliciting needs they were unable to address, and provider unfamiliarity with community-based resources to address social needs. Clinic-level barriers to awareness included limited appointment times and connecting patients to appropriate community-based organizations. System-level barriers to awareness included navigating documentation challenges on the electronic health record.
UNASSIGNED: Overcoming barriers to effective screening for social needs in primary care requires not only practice- and provider-level process change but also an alignment of community resources and advocacy of policies to redistribute community assets to address social needs.

Organized cervical screening programmes are commonplace in high-income countries. To provide an equitable cervical screening service, it is important to understand who is and is not attending screening and why. Promotion of screening and service improvement is not possible without recognition and identification of the barriers and needs of communities that are less engaged with screening. This study explored stakeholder perceptions of cervical screening attendance and accessibility in Ireland. Semi-structured interviews were conducted with 12 healthcare professionals, policymakers and academics. Interviews were conducted online in 2022. Reflexive thematic analysis was used inductively to generate themes, supported by NVivo. Three themes were developed: (i) getting the right information out the right way, (ii) acceptability and accessibility of screening and (iii) trying to identify and reach the non-attenders. Participants felt public knowledge of cervical screening and human papilloma virus was low and communication strategies were not adequate. Individual, cultural, structural and service-level factors influenced the accessibility and acceptability of screening. Identifying and reaching non-attenders was considered challenging and community outreach could support those less likely to attend screening. Stakeholder perspectives were valuable in understanding the complexities of screening accessibility and attendance from individual to service-level factors. Cultural competency training, inclusive language and visual cues in waiting rooms would support engagement with some populations who may be hesitant to attend screening. Collaboration with community organizations has opportunities to promote screening and understand the needs of those less likely to attend screening.