Children born with single-ventricle heart disease face a myriad of medical comorbidities, psychological risks, and quality of life challenges as they age. Parent perspectives on their care from diagnosis through development are critical to understand best ways and times to intervene to promote child and family adjustment to illness.

Parents of children with status post-Fontan procedure were recruited to complete an electronic qualitative survey exploring parent perspectives of care. Grounded theory was utilised to analyse the data and identify themes and subthemes.

Twenty-four parents completed the survey, describing their experience from diagnosis through the early years of treatment and into childhood and adolescence. Seven core themes were identified: survival and hope, parent stress and support, early stress and development, quality of life, increased independence, connection to the team, and communication. Initially, parents shared early worry regarding survival as they learned more about the condition and underwent surgeries. Later, parents supported their child’s development and balanced ongoing hypervigilance with promotion of normalcy in their child’s life. Quality of life and behavioural health concerns emerged amongst other medical comorbidities, and parents emphasised the need for both child and parent support in navigating family life with this illness.

Parent perspectives highlighted the importance of family-centred, multidisciplinary care models that integrate medical subspeciality and psychosocial services for holistic care of children born with single-ventricle heart disease. Implications for care across development and interventions for children and parents are discussed.

Around 10% of people living with dementia (PLWD) will experience a deterioration in their condition that will require urgent (‘crisis’) community support or an in-patient psychiatric admission. We have previously shown that people at high risk of a crisis event can be identified at the point of diagnosis. How the idea that someone is at increased risk of experiencing a crisis event in their care is best communicated is not known. Here, we describe the analysis of interviews with clinicians and PLWD, to understand their perspective and the co-production of tools designed to support risk communication.

To explore multistakeholder perspectives (healthcare professionals, carers, PLWD; n = 12) on the communication of risk of future in-patient psychiatric admission or enhanced ‘crisis’ community care and develop tools to support communication.

This pilot study used an experience-based, co-design approach. Reflexive thematic analysis was used to analyse transcripts, leading to co-development of draft educational materials.

We identified five themes that inform how risk should be communicated. Participants underlined the importance of timing, setting and follow-up appointments. Digital tools were considered essential, but they were not seen as a substitute to face-to-face appointments. Individual preferences varied, highlighting the need for patient-centred communication. The findings led to the co-development of clinician guidelines and educational materials.

Risk communication in dementia is complex and must be personalised to be most effective. Our findings may have relevance for the communication of other areas of risk in dementia beyond risk of care crises.

During the COVID-19 pandemic, educators were impacted across domains of psychological, physical, social, and occupational health. Occupational environments, including classrooms, changed significantly due to COVID-19. This study aimed to characterize the nuanced experience of educators during the COVID-19 pandemic.

Participants included 918 United States educators (e.g., teachers, paraeducators, support professionals, and administrators). Educators completed the survey via Qualtrics during November and December of 2020. The survey included eight qualitative questions, and responses were randomized to inductive or deductive datasets for analyses.

Our deductive results showed that individuals reported changes in several facets of health, with educators reporting increases in stress (38.0%) and feelings of isolation (45.9%). Our results also showed impacted occupational health, citing increased responsibility at work (34.0%) and feeling as though their voice was not heard after voicing concerns to either building- or district-level administration (28.2%).

One of the key findings that emerged at the systemic level was educators reporting a lack of decision-making agency within the workplace. Through including educators in the conversations regarding decisions at all levels, agency may be increased. Educators not only shape the students they teach, but the communities within which they work, making a focus on their health paramount.

The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question “what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?”

This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.

Thematic synthesis of the data generated five analytical themes: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.

This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.

Screening tools for attention-deficit/hyperactivity disorder (ADHD) help to identify individuals likely to have ADHD. Several screening scales are used for identifying adults with ADHD, based on criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The ADHD symptoms described in the DSM were originally developed to describe the behaviours of children, not adults, and focus on the triad of symptoms of inattention, hyperactivity, and impulsivity. Clinical research and experience, however, have revealed additional dimensions of adult ADHD, such as hyperfocus, racing thoughts, emotional lability, impaired sleep, and differences in time perception. Commensurate with the conditions’ growing recognition, the adult ADHD presentation requires rethinking.

To understand better the ADHD symptomatology experienced by adults, qualitative interviews were conducted with 11 diagnosed adults.

Using thematic analysis, nine themes of adult ADHD symptoms were identified. The first three themes map to the original triad of symptoms – attentional difficulties, hyperactivity, and impulsivity. A further three themes identified are briefly mentioned in the DSM – disorganisation, forgetfulness, and reduced activation. The final three themes are covered to some degree in the current rating scales but are absent from the DSM 5 – emotional lability, sleep difficulties, and time perception difficulties.

This study highlights nine themes relevant to adult ADHD, six of which are absent from the DSM 5’s triad. This research highlights gaps in current assessment tools and suggests symptoms that are more reflective of the adult experience of having ADHD.

Perinatal palliative care (PPC) offers holistic support to families of babies with life-limiting conditions, addressing emotional, psychological, and practical needs alongside ensuring dignity for the baby. While there is growing evidence to support its benefits, there remains inconsistent service provision, limited integration with maternity care, and regional disparities. This study explores parental experiences with perinatal hospice services to inform future care models.

The study was undertaken in the Northwest of England. Fourteen semi-structured interviews were undertaken with 17 parents (three joint interviews) who had experienced perinatal loss and had engaged with PPC services. Semi-structured interviews were used to gather insights into their perceptions of care they received, focusing on issues such as communication, the timing of referrals, and the emotional and practical support provided. Data was analyzed using a thematic analysis approach.

The obtained REC reference: 22/YH/0028 Results Five key themes were identified: the significance of language used by healthcare professionals when discussing the baby’s condition; the importance of timely introduction to hospice care; recognition that grief is a personal and evolving process; the role of shared experiences in building relationships; and the importance of creating lasting memories.

Findings highlight the importance of improving healthcare professionals’ communication skills and integrating multidisciplinary palliative care services early in the care pathway. Parents expressed gratitude for the hospice support, particularly the opportunity to spend quality time with their baby and make lasting memories. However, a more consistent perinatal hospice care provision across the UK is needed.

To explore the experiences of military medical first responders managing mass casualty incidents (MCIs) during the ongoing conflict in Ukraine to identify key challenges and insights.

This qualitative study employed in-depth, semi-structured interviews with medical first responders who managed MCIs in Ukraine. Thematic analysis was leveraged by our research team to identify recurring themes and patterns within the interview data.

Our results revealed crucial takeaways related to the (1) need for preparedness and training, (2) variability of triage, (3) importance of communication and teamwork, and (4) the resulting psychological strain.

These firsthand accounts offer valuable lessons for identifying challenges of first responders, developing areas of future research for MCI response strategies, and enhancing the readiness and well-being of medical first responders in current and future conflicts.

Subjective perspectives on aetiological factors in atypical depression have not been previously explored from the viewpoint of those with lived experience.

This study aimed to explore individuals’ subjective experiences and explanations of atypical depression, and to examine whether perceived gender-specific influences might contribute to the observed gender disparity in atypical depression prevalence.

Semi-structured, one-to-one interviews were conducted online with 16 individuals. Data were analysed using thematic analysis, employing an inductive approach and interpreted within a constructionist framework. Data coding was conducted using NVivo.

Key themes centred on the prevalence of comorbid conditions and how they affected atypical depression presentation; how trauma was seen as both a causal factor and catalyst; the subjective impact of gender identity and roles; how environmental factors seemed to affect atypical depression onset and presentation; the difficulties experienced with atypical depression symptom variability in daily life; and reported coping behaviours.

These findings highlight how individuals with atypical depression believed onset to be linked to experiences of trauma and comorbidity, in addition to ongoing influences of varied environmental factors. The variability of atypical depression symptoms in both the short and long term appears to be a core challenge in this subgroup. The gender disparity of atypical depression is also explored through the lens of lived experience and gender identity. Future research would benefit from exploring further these potential contributing factors, to provide a better understanding of their complex influences on atypical depression onset and maintenance.

Federally Qualified Health Centers (FQHC) are critically important in addressing the unmet healthcare needs of individuals impacted by poverty. We used implementation science frameworks to advance understanding of perceived and actual facilitators and barriers to a novel asthma intervention before initiating a FQHC practice-based clinical trial.

Interviews with clinicians and administrators explored pre-implementation trial considerations. Transcripts were inductively coded using conventional content analysis.

Sixteen administrators and/or clinicians (88% female; mean age 49 ± 12.21; 44% Black race; 25% Hispanic ethnicity) from four FQHCs participated. Themes included (1) multi-level factors making successful implementation more or less likely, (2) pandemic-specific concerns with implications for current healthcare delivery challenges, and (3) unintended implementation consequences.

Participants were optimistic about the likelihood of successful intervention implementation if challenges were recognized and managed. Combined with other planned assessments, this data may provide a more comprehensive evaluation of clinical trial implementation in FQHCs.

Declining participant engagement threatens human subjects research. Participant feedback systems (PFS) may combat this decline by empowering participants to evaluate their research experiences and share that feedback with researchers to identify targets for improvement. PFS signal that participant experiences are prioritized, making the request for feedback itself an intervention. PFS design work remains largely confined to clinical research. This exploratory study investigates the design parameters of extending PFS to nonclinical research. We conducted focus groups with nonclinical stakeholders: Experienced research participants (ERP) and research team members (RTM).

ERP focus groups were organized by affinity (LGBTQIA+, BIPOC, persons with disabilities, neurodivergent, and a general group). RTM focus groups were organized by unit within the University of Michigan. Transcripts were analyzed using inductive thematic analysis.

Ten focus groups (ERP: 5, n = 25; RTM: 5, n = 26) identified key PFS design considerations: (1) motivations for feedback, (2) feedback collection, and (3) feedback delivery. ERP and RTM collectively preferred anonymous web-based surveys with six potential topic areas: communication, respect, being valued, receiving value, burden, and safety. Feedback delivery faced two key design tensions: balancing institutional standardization with study-specific insights and aligning leadership’s preference for high-level summaries with frontline staff’s need for detailed, real-time feedback.

Expanding PFS to nonclinical research requires balancing centralization and study-specific flexibility. While centralization enhances consistency, the diversity of nonclinical studies necessitates adaptable implementation. A hybrid model is proposed to optimize feasibility. Future research should refine and test this model.

To triangulate the perspectives of mental health clinicians, older people with mental illness and their carers on Advance Care Planning (ACP) to develop evidence-informed educational resources.

The study setting was public mental health services. Results of previously reported reflexive thematic analyses of interviews discussing ACP with three stakeholder groups (12 older people with mental illness, 5 carers, and 15 mental health clinicians) were triangulated. The emergent overarching themes were considered within an interpretive description framework to develop educational resources to support each of the three stakeholder groups to engage in ACP.

Four overarching themes emerged: (i) importance of ACP recognized but ACP often not initiated; (ii) knowledge gaps; (iii) skill gaps – how to do it; and (iv) practical and process issues. Taking into account the research team’s knowledge of the local health contexts, two formats of educational resources were developed; written information sheets bespoke to identified knowledge gaps and needs for each group, and brief training films for clinicians addressing need for practical skills in ACP. The consumer and carer sheets were translated into three languages. Two brief clinician training films demonstrated introducing ACP within mental health reviews and how to address aspects of complexity in ACP with older adults with a mental illness and carers.

The current absence of specific educational resources for ACP with older people with mental illness contrasts with the recognized importance of ACP. Written resources were created to address empirically identified knowledge gaps and misconceptions and provide practical information and training films developed to demonstrate key skills for clinicians. The resources were made freely available, with dissemination planned to promote and evaluate use as part of a more comprehensive educational intervention. Resources supporting clinician, consumer and carer education are an important first step towards empowerment and participation in ACP.

There is growing consensus on essential components of care for hospital-presenting self-harm and suicidal ideation, yet these are often inconsistently implemented. This qualitative study aimed to explore the implementation of components of care across hospitals. Interviews were conducted with health professionals providing care for self-harm and suicidal ideation in hospital emergency departments. Participants (N = 30) represented 15 hospitals and various professional roles. A framework analysis was used, where factors affecting each care component were mapped by hospital and hospital grouping.

A timely, compassionate response was facilitated by collaboration between liaison psychiatry and emergency-department staff and the availability of designated space. Other factors affecting the implementation of care components included patient preferences for, and staff encouragement of, family involvement, time taken to complete written care plans and handover and availability of next care impacting follow-up of patients.

The findings suggest a need for further integration of all clinical professionals on the liaison psychiatry team in implementing care for self-harm; improved systems of handover; further training and awareness on the benefits and optimal processes of family involvement; as well as enhanced access to aftercare.