Challenges and solutions during analysis in a longitudinal narrative case study.

AIM: To describe the challenges faced by those performing complex qualitative analysis during a narrative study and to offer solutions. BACKGROUND: Qualitative research requires rigorous analysis. However, novice researchers often struggle to identify appropriately robust analytical procedures that will move them from their transcripts to their final findings. The lack of clear and detailed accounts in the literature that consider narrative analysis and how to address some of the common challenges researchers face add to this problem. DATA SOURCES: A longitudinal narrative case study exploring the personal and familial changes reported by uninjured family members during the first year of another family member's traumatic brain injury. Review methods This is a methodological paper. DISCUSSION: The challenges of analysis included: conceptualising analysis; demonstrating the relationship between the different analytical layers and the final research findings; interpreting the data in a way that reflected the priorities of a narrative approach; and managing large quantities of data. The solutions explored were: the mapping of analytic intentions; aligning analysis and interpretation with the conceptual framework; and the use of matrices to store and manage quotes, codes and reflections. CONCLUSION: Working with qualitative data can be daunting for novice researchers. Ensuring rigorous, transparent, and auditable data analysis procedures can further constrain the interpretive aspect of analysis. Implications for research/practice The solutions offered in this paper should help novice researchers to manage and work with their data, assisting them to develop the confidence to be more intuitive and creative in their research

How does a narrative understanding of change in families post brain injury help us to humanise our professional practice?

In this paper we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move toward a future which is not dominated by a discourse of loss. While loss and negative change is an important, and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families; providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI

The experience of families following traumatic brain injury in adult populations: A meta-synthesis of narrative structures

Background: Traumatic brain injury has a significant effect on uninjured family members. Typically, this has been examined with a focus on psychopathological outcomes including stress, depression and anxiety. However, in recent years there has been increasing interest in the subjective experiences of families postinjury leading to a plethora of qualitative studies. Therefore, an in-depth examination and synthesis of this literature is now relevant and timely. Objective: To examine the subjective experiences of families following traumatic brain injury in adult populations in the sub/post-acute period through the synthesis of original qualitative research. Design: This paper presents a meta-synthesis using Thomas and Harden’s framework of ‘thematic synthesis’ rooted in a critical realist philosophy. Data sources: In July 2019 five electronic databases, were searched for the terms ‘traumatic brain injury’, ‘family’ and ‘qualitative’. Studies were included if the primary research reported qualitative data about the subjective experiences of family members of adults with traumatic brain injury and had been published in a peer reviewed journal. Studies with mixed brain injury samples, child or adolescent traumatic brain injury or disorders of consciousness were excluded. Hand searching and citation searches were also completed. Review methods: Two reviewers screened titles, abstracts and full text and reached consensus through critical discussion. Thirty papers were finally agreed for inclusion in this review. Each study was then assessed for relevance, resonance and rigour using the Critical Appraisal Skills Programme (CASP) tool. Line by line coding of the findings in each paper was conducted as the basis for a thematic analysis and synthesis. Results: Descriptive themes were identified followed later by analytical themes. This final stage was informed by a narrative lens and from these, eight narrative functions belonging to four dimensions were identified from the subjective experiences of families post-traumatic brain injury. Specifically, these were: (1) Displacing and Anchoring; (2) Rupturing and Stabilising; (3) Isolating and Connecting; (4) Harming and Healing. Conclusions: The interpretation of the narrative functions revealed the substantial existential work involved in negotiating lives, maintaining family system equilibrium and moving forward. As such, family members have their own unique narrative needs. Despite contemporary service models built around the injured person, service providers are well placed to support families in this everyday narrative work through actively attending to narrative structures and understanding the implications of these for family experience

We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury.

Subjective changes are increasingly recognised as important in recovery and rehabilitation following traumatic brain injury. Accumulation of subjective changes over time has led many to examine the question of ‘continuity of self’ post-injury. Vacillation between feeling the same and different is common and often at odds with the medical narrative preparing families for permanent change. This position of ambiguity was examined in a qualitative narrative study. The aim of this paper is to describe the narrative structures used by uninjured members of a family to understand change. These changes relate primarily, to their perspective of whether and how the injured person had changed, but also secondarily to whether and why they themselves felt they had changed in the first year post-injury. Nine uninjured family members from three families took part in three unstructured interviews during the first twelve months post-injury. In-depth narrative analysis showed family members used biographical attendance; biographical disruption; biographical continuity and biographical reconstruction to understand change. Drawing on these findings it is argued that concentrating on a narrative of change is too limiting and that engaging in biographical narratives may help humanise care provided to injured individuals and their families. Implications for research and practice are discussed

Neurotrauma clinicians' perspectives on the contextual challenges associated with long-term follow-up following traumatic brain injury in low-income and middle-income countries: a qualitative study protocol.

INTRODUCTION: Traumatic brain injury (TBI) is a global public health concern; however, low/middle-income countries (LMICs) face the greatest burden. The WHO recognises the significant differences between patient outcomes following injuries in high-income countries versus those in LMICs. Outcome data are not reliably recorded in LMICs and despite improved injury surveillance data, data on disability and long-term functional outcomes remain poorly recorded. Therefore, the full picture of outcome post-TBI in LMICs is largely unknown. METHODS AND ANALYSIS: This is a cross-sectional pragmatic qualitative study using individual semistructured interviews with clinicians who have experience of neurotrauma in LMICs. The aim of this study is to understand the contextual challenges associated with long-term follow-up of patients following TBI in LMICs. For the purpose of the study, we define 'long-term' as any data collected following discharge from hospital. We aim to conduct individual semistructured interviews with 24-48 neurosurgeons, beginning February 2020. Interviews will be recorded and transcribed verbatim. A reflexive thematic analysis will be conducted supported by NVivo software. ETHICS AND DISSEMINATION: The University of Cambridge Psychology Research Ethics Committee approved this study in February 2020. Ethical issues within this study include consent, confidentiality and anonymity, and data protection. Participants will provide informed consent and their contributions will be kept confidential. Participants will be free to withdraw at any time without penalty; however, their interview data can only be withdrawn up to 1 week after data collection. Findings generated from the study will be shared with relevant stakeholders such as the World Federation of Neurosurgical Societies and disseminated in conference presentations and journal publications

Using honey to heal diabetic foot ulcers

Diabetic ulcers seem to be arrested in the inflammatory/proliferative stage of the healing process, allowing infection and inflammation to preclude healing. Antibiotic-resistant bacteria have become a major cause of infections, including diabetic foot infections. It is proposed here that the modern developments of an ancient and traditional treatment for wounds, dressing them with honey, provide the solution to the problem of getting diabetic ulcers to move on from the arrested state of healing. Honeys selected to have a high level of antibacterial activity have been shown to be very effective against antibiotic-resistant strains of bacteria in laboratory and clinical studies. The potent anti-inflammatory action of honey is also likely to play an important part in overcoming the impediment to healing that inflammation causes in diabetic ulcers, as is the antioxidant activity of honey. The action of honey in promotion of tissue regeneration through stimulation of angiogenesis and the growth of fibroblasts and epithelial cells, and its insulin-mimetic effect, would also be of benefit in stimulating the healing of diabetic ulcers. The availability of honey-impregnated dressings which conveniently hold honey in place on ulcers has provided a means of rapidly debriding ulcers and removing the bacterial burden so that good healing rates can be achieved with neuropathic ulcers. With ischemic ulcers, where healing cannot occur because of lack of tissue viability, these honey dressings keep the ulcers clean and prevent infection occurring

Differences in 5'untranslated regions highlight the importance of translational regulation of dosage sensitive genes

Background: Untranslated regions (UTRs) are important mediators of post-transcriptional regulation. The length of UTRs and the composition of regulatory elements within them are known to vary substantially across genes, but little is known about the reasons for this variation in humans. Here, we set out to determine whether this variation, specifically in 5’UTRs, correlates with gene dosage sensitivity. Results: We investigate 5’UTR length, the number of alternative transcription start sites, the potential for alternative splicing, the number and type of upstream open reading frames (uORFs) and the propensity of 5’UTRs to form secondary structures. We explore how these elements vary by gene tolerance to loss-of-function (LoF; using the LOEUF metric), and in genes where changes in dosage are known to cause disease. We show that LOEUF correlates with 5’UTR length and complexity. Genes that are most intolerant to LoF have longer 5’UTRs, greater TSS diversity, and more upstream regulatory elements than their LoF tolerant counterparts. We show that these differences are evident in disease gene-sets, but not in recessive developmental disorder genes where LoF of a single allele is tolerated. Conclusions: Our results confirm the importance of post-transcriptional regulation through 5'UTRs in tight regulation of mRNA and protein levels, particularly for genes where changes in dosage are deleterious and lead to disease. Finally, to support gene-based investigation we release a web-based browser tool, VuTR, that supports exploration of the composition of individual 5'UTRs and the impact of genetic variation within them

CardioClassifier: disease- and gene-specific computational decision support for clinical genome interpretation

Purpose Internationally adopted variant interpretation guidelines from the American College of Medical Genetics and Genomics (ACMG) are generic and require disease-specific refinement. Here we developed CardioClassifier (http://www.cardioclassifier.org), a semiautomated decision-support tool for inherited cardiac conditions (ICCs). Methods CardioClassifier integrates data retrieved from multiple sources with user-input case-specific information, through an interactive interface, to support variant interpretation. Combining disease- and gene-specific knowledge with variant observations in large cohorts of cases and controls, we refined 14 computational ACMG criteria and created three ICC-specific rules. Results We benchmarked CardioClassifier on 57 expertly curated variants and show full retrieval of all computational data, concordantly activating 87.3% of rules. A generic annotation tool identified fewer than half as many clinically actionable variants (64/219 vs. 156/219, Fisher’s P = 1.1  ×  10−18), with important false positives, illustrating the critical importance of disease and gene-specific annotations. CardioClassifier identified putatively disease-causing variants in 33.7% of 327 cardiomyopathy cases, comparable with leading ICC laboratories. Through addition of manually curated data, variants found in over 40% of cardiomyopathy cases are fully annotated, without requiring additional user-input data. Conclusion CardioClassifier is an ICC-specific decision-support tool that integrates expertly curated computational annotations with case-specific data to generate fast, reproducible, and interactive variant pathogenicity reports, according to best practice guidelines

A qualitative exploration of fatherhood after acquired brain injury (ABI)

Acquired Brain Injury (ABI) significantly affects individuals across multiple areas of intimate, familial, and parental domains. Gender and identity are pivotal research areas in navigating life after ABI. To date, scant research has explored gendered experiences, particularly those related to the masculine lifeworld. This study aimed to explore how men who were fathers before their injuries experience fatherhood after ABI. An Interpretative phenomenological analysis (IPA) methodology was used, and seven fathers participated in the semi-structured interviews (time since injury 1-18 years, age range 27-66 years) which explored their meaning-making. Four superordinate themes were drawn from all interviews through engaging with the qualitative research process: (1) what being a father means, (2) altered relationships with others, (3) becoming lost and finding their way through, and (4) renewed fatherhood. The findings show intersectionality between pre-and post-injury comparisons of self and social identities, alongside the contextual and societal identities in the subjective fathering experiences. Through increased understanding, we may enable fathers to find new ways to resolve, reformulate, and connect to move into their future possible fatherhood. The importance of this research is in giving voice to these less represented men so that we may shape our understanding to aid future fathers post-ABI