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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?”
Methods
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.
Results
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.
Significance of results
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.
Methods:
To understand better the ADHD symptomatology experienced by adults, qualitative interviews were conducted with 11 diagnosed adults.
Results:
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.
Conclusions:
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.
Depression among women living with HIV affects their psychological well-being, HIV disease management, and prevention of mother-to-child transmission. A subset of 25 women selected from the intervention arm of the Maternal Depression Treatment in HIV (M-DEPTH) cluster randomized trial were interviewed; they had received either antidepressant therapy (ADT) or problem-solving therapy (PST). Their experiences as new mothers with the effects of depression and treatment on HIV disease and pregnancy management were assessed in a brief qualitative interview conducted in 2022. Seven were treated with ADT, 15 with PST, and three received both treatment modalities; all but two (n=23) responded to depression treatment. Participants reported improved adherence to HIV antiretroviral therapy and described the treatment as being effective in alleviating depressive symptoms. Additionally, the process of treatment helped them to learn a lot about depression, mental health, and its connection to physical and emotional well-being. Participants also reported improvements in parenting and pregnancy management. The results highlight the need for greater prioritization of mental health care for women living with HIV to prevent poor mental health outcomes and enhance overall functioning, including management of HIV disease, pregnancy, and parenting.
While much of this book has been focused on describing post-intensive care syndrome (PICS) in objective terms, is if often the personal stories of survivors of critical illness and their loved ones that are so much more revealing than the distance walked during 6 minutes or a score on a cognitive test. It was not until I began seeing patients in my ICU follow-up clinic that I truly appreciated how life-changing an experience surviving critical illness could be. Understanding the real-life impact of the physical, functional, cognitive, psychiatric, and social impairments that those suffering from PICS face is a profoundly moving and motivating experience. For that reason, I wanted to close this book with stories of survivors of critical illness and their loved ones, allowing the reader to synthesize and contextualize the objective data that has heretofore been presented in neatly parsed, individual chapters and to more deeply appreciate how that data translates into a much more impactful lived experience.
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.
Methods
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.
Ethical approval
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.
Significance of results
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.
This article explores the experiences of third sector development actors and the actions that they took during the Dominican Republic’s National Regularization Plan for Foreigners until its expiration in the summer of 2015. The study employs an interpretivist approach that assumes that third sector development actors construct their roles through an interactive process based on their co-created interpretations and negotiated meanings ascribed to factors, conditions, and situations related to the regularization plan. Data were gathered from December 2015 to July 2016 from 19 semi-structured interviews with third sector development actors, who work with members of the Haitian immigrant community. Using constructivist grounded theory methods, the analysis identifies four key roles of third sector actors in the documentation process that incorporate guidance, support, collaboration, and accompaniment. This research elevates the importance of third sector organizations in responding to immigrant documentation issues.
The study of nonprofit finance and financial management is growing in popularity. The numerical focus and availability of archival U.S. data have fueled the growth of the field; however, this availability has also influenced the research questions and methods utilized by researchers. Despite the dominance of large-scale quantitative analysis in the literature, there are a wide variety of research methods available in the field. Each approach has strengths and limitations that should be utilized to answer different research questions in different ways. We catalog these techniques and include recommendations on how and why to deliberately cultivate methodological pluralism in nonprofit finance and financial management research.
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.
Methods
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.
Results
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.
Conclusions
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.
Aims
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.
Method
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.
Results
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.
Conclusions
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.
People with disabilities in the US are now a health disparities population. Though 25% of US adults have a disability, only 5% of medical research grants are disability related. Knowledge about researchers’ perceived barriers to including people with disabilities in research has focused on a single disability/condition and thus has limited translational science applications. Our CTSA’s Disability as Difference: Reducing Researcher Roadblocks (D2/R3) project examined such roadblocks towards inclusion of people with intellectual and developmental disabilities (I/DD). I/DDs are broad, heterogeneous conditions that originate in childhood, have varying impact and function, and persist throughout the lifespan. Strategies that mitigate their under-representation in research will likely have general applicability to all disabilities. In D2/R3’s first phase we conducted semi-structured interviews with translational science and I/DD program leaders at ten US institutions about perceived barriers and facilitators to including people with I/DD in research. Interviews were held with 25 individuals from partnering Intellectual and Developmental Disabilities Research Centers, University Centers for Excellence in Developmental Disabilities, and Clinical and Translational Science Award programs. Collaborative thematic coding identified key themes as: attitudinal barriers (e.g., assumptions about consent capacity), logistical barriers (e.g., accommodation costs), health disparities, and generalizability concerns. Findings informed development of a survey based on Prosci’s ADKAR® model of change management’s five components: Awareness, Desire, Knowledge, Ability and Reinforcement. Exclusion appears to stem from researchers’ lack of awareness, misconceptions, and knowledge gaps rather than insurmountable obstacles.
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.
Methods:
Interviews with clinicians and administrators explored pre-implementation trial considerations. Transcripts were inductively coded using conventional content analysis.
Results:
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.
Conclusions:
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).
Methods:
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.
Results:
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.
Conclusion:
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.
Qualitative data and analysis can enrich our understanding of key questions in behavioural public policy. In this perspective, I make the case for incorporating qualitative approaches better and more often into our research. I offer practical ideas on how to do this, and a call for action from researchers, reviewers, editors, policy makers and our Higher Education and funding institutions.
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.
Methods
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.
Results
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.
Significance of results
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.
Results
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.
Clinical implications
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.
While around one-fifth of UK secondary school pupils exhibit clinically significant eating pathology, in-school mental health provision does not include interventions to address such eating pathology.
Aims:
This preliminary qualitative study aimed to explore the views of staff, parents and pupils, on the idea of introducing a school-based brief cognitive behavioural therapy programme for non-underweight eating disorders.
Method:
31 pupils, 22 parents and 27 staff participated in 12 focus groups across four schools. The semi-structured interview guide covered topics around the practicalities of a potential eating disorders treatment programme, the acceptability of the intervention, and likelihood of future uptake.
Results:
Five over-arching themes and 12 subthemes emerged, reflecting the scale of eating and body image concerns, management limitations, and the importance of prioritising mental health over education. Advantages, challenges, considerations, and solutions were proposed for an in-school eating disorders treatment programme.
Conclusions:
These qualitative data show that there is support for an appropriately implemented in-school delivery of brief, evidence-based treatment, demonstrating the potential scope of such an approach to support children and adolescents to receive early help with their eating problems and body image concerns.
The decisions made by horse owners on behalf of their animal, including decisions to involve a veterinarian, play an important role in the management of pain. This study explored horse owners’ experiences to understand how they conceptualised chronic pain within the context of their horse-human relationship, what led them to seek veterinary involvement, and how veterinary interactions shaped their perceptions of pain and its management. An ethnographic approach using constructivist grounded theory methods was adopted. This paper draws upon field notes generated through 200 h of observation undertaken within four veterinary practices in the UK, as well as interviews with horse owners and carers. Analysis identified that owners’ understandings of pain-related issues of their horse were based upon knowledge of what was normal for their animal, and deviation from this norm. Horse behaviours were ascribed meaning by owners in light of contextual factors, in turn affecting owners’ perceptions of pain. While pain could factor into decisions to initiate a veterinary consultation, it was generally not the specific reason owners presented their animal. Veterinarians’ approaches to identifying and treating painful problems played a role in the formulation of owners’ understanding of their horse’s behaviour. Interactions had implications not only for treatment opportunities, but for perceptions of veterinary expertise. This study highlights the context-specific nature through which pain recognition and decisions regarding a horse’s treatment arise. It highlights the drivers of human decision-making and offers potential avenues to support human behaviour change and improve horse welfare.
In the United Kingdom (UK), approximately one million people cannot speak English well enough to access therapy in English. If there is no shared language used by both the client and therapist, then individuals require access to an interpreter so that they receive an equitable service. Research highlights the anxiety and pressures that working with an interpreter can bring for professionals. In light of the Coronavirus pandemic and increased remote working, this research aimed to explore the experience and perspectives of cognitive behavioural therapists working with language interpreters remotely. Semi-structured interviews were conducted with 18 participants who were asked about their experience of working with interpreters remotely. Data were analysed using Braun and Clarke’s six phases of thematic analysis. The analysis resulted in four main themes being constructed: the system doesn’t make it easier; working in a culturally sensitive way; the powerful role of the interpreter; and remote therapy – different landscape, different journey. Findings offer an understanding of how working with an interpreter impacts ways of working in cognitive behavioural therapy. The findings draw attention to the impact of the organisational context where therapists work.
Key learning aims
After reading this paper, it is hoped that readers will be able to:
(1) Consider cognitive behavioural therapists’ experiences of challenges and barriers when working remotely with interpreters.
(2) Look at the experience and perspectives of cognitive behavioural therapists working with interpreters remotely (in light of the COVID-19 pandemic and increased remote working practices).
(3) Consider the support needed to enable therapists, healthcare services and broader healthcare structures to provide services to clients through working with interpreters and adapting therapy for diverse cultural groups.
Consistent uptake and implementation of evidence-based CBT (EB-CBT) in clinical practice remains challenging. Understanding key barriers and facilitators experienced by CBT therapists is essential for developing effective implementation strategies to enhance adoption of EB-CBT practices. This study applies the Capability, Opportunity, Motivation-Behaviour (COM-B) and Theoretical Domains Framework (TDF) to provide a theoretically driven exploration of perceived barriers and facilitators to implementing EB-CBT reported by CBT therapists. A cross-sectional survey design incorporating qualitative open-ended questions was used to gather in-depth insights from 228 UK-based CBT therapists. Data were analysed using reflexive thematic analysis. Inductive analysis identified ten barriers and eight facilitators, which were deductively mapped onto the COM-B and TDF to identify key determinants affecting practice at the individual therapist or broader organisational level. At the therapist level, barriers identified were understanding of evidence-based decision making, scepticism about EB-CBT as being rigid, based on flawed evidence, and lacking client centredness, and a preference for intuitive eclecticism. Therapist facilitators included skills in research literacy and formulation, guided self-reflection as a behaviour regulation strategy, and reinforcement through positive outcomes. Organisational barriers were limited or complex research/guidelines, difficulty accessing knowledge, lack of training/supervision, and service constraints. Organisational facilitators consisted of external monitoring as a behavioural regulation strategy, fostering communities of practice, gaining knowledge through resources, and access to training/supervision. Key perceptions as well as misconceptions around using EB-CBT in practice were identified, highlighting the need for multi-level strategies addressing both individual and organisational factors to enhance therapists’ capability, motivation, and opportunity to adopt EB-CBT practices.
Key learning aims
As a result of reading this paper, readers should:
(1) Understand the key barriers UK therapists perceive as hindering the implementation of evidence-based CBT practices.
(2) Understand the key factors UK therapists perceive as facilitating and enhancing the implementation evidence-based CBT practices.
(3) Be able to use the COM-B and TDF model to map key determinants affecting adoption of evidence-based CBT practice at both the individual therapist and broader organisational level.
(4) Consider theoretically driven implementation interventions which could be used to target identified individual and organisational factors to improve sustained adoption of EB-CBT.
Trauma plays a critical role in psychosis, but the nature of the relationship between specific symptoms and trauma history remains unclear.
Aims
The aim of the study was to explore the experience of positive symptoms and their association with trauma and life events from the perspective of patients with first-episode psychosis (FEP).
Method
Seventeen participants who were enrolled in an FEP programme participated in a qualitative interview examining their life and trauma events, the onset of their symptoms, their experience of positive symptoms and their perceived associations between symptoms and life and trauma events. The interview was based on a semi-structured interview of six main questions and follow-up questions. Participants also completed the Trauma and Life Experiences Checklist (TALE), and were asked about the relevance of the whole interview. Thematic content analysis, exploratory cluster analysis and matrix queries coding were performed.
Results
Fifteen participants described the experience of psychotic symptoms as distressing or traumatic. Eleven participants attributed the onset of positive psychotic symptoms to trauma and life events. Ten participants described explicit thematic associations between their symptoms and trauma and life events. Twelve participants evaluated the interview as relevant and helpful.
Conclusions
Our findings give insight into the lived experience of positive symptoms and potential psychological interventions valuing causal theories of participants and the association with life and trauma events.