National Rehabilitation Hospital

This study explores young people's unique experience of living with a parent with an acquired spinal cord injury. Despite the potential impact of acquired parental disability on children's lives, research studies on the experience are scarce. Interpretative phenomenological analysis was used to analyze semistructured interviews with nine adolescents and young adults (13-22 years) recruited in 2021, via the National Rehabilitation Hospital in Ireland. Four main themes were identified: 1. The event and immediate aftermath, 2. Suppressing emotions and keeping the best side out, 3. Changes and continuities in family relationships and roles, and 4. Strengthening connection through open communication. Participants described feeling frightened and alone in the immediate aftermath of parental injury and highlighted the importance of support networks. The impact on adjustment of suppressing emotions to protect parents and preserve a public persona was identified. Role changes altered family dynamics and increased household responsibilities were experienced as challenging, whereas improvements in relationships were also reported. Opportunities for open communication throughout the developmental adjustment process were identified as a key factor in maintaining psychological wellbeing after a life-changing event. This study provides insight into the lived experience of parental disability in a small sample of white Irish participants. Although this sample may limit its generalizability, the study offers implications for healthcare professionals and families seeking to promote resilient adjustment in young people following the intrusion of spinal cord injury into family life. (PsycInfo Database Record (c) 2026 APA, all rights reserved).

BackgroundDiaphragmatic electrical stimulation (DES) describes the process whereby electrical impulses are delivered to the diaphragm or phrenic nerves to elicit diaphragmatic contraction. DES is also known as diaphragmatic pacing, phrenic pacing, electrophrenic respiration or electroventilation. DES may be used as an alternative to positive pressure ventilation in selected patients with high spinal cord injury (SCI) or central hypoventilation syndromes (CHS). By enabling a more physiological form of respiration, it can allow speech, improve olfaction, decrease the frequency of respiratory infections, and ultimately it may improve both the duration and quality of patients’ lives.Case DescriptionThis case report provides an overview of the use of DES in 3 patients, one with diaphragmatic intramuscular electrodes and 2 with phrenic nerve stimulation (PNS) leads. We provide details of our assessment strategy prior to implantation and videos of the expected diaphragmatic descent and flow diversion created in a ventilated patient with a single twitch stimulus. Within two months of implantation, our first patient had measurably improved speech in addition to periods of ventilator independence. Our second and third patients were successfully weaned from the ventilator within 6 months. Staffing and safety concerns have mandated a return to overnight mechanical ventilation for both patients. Despite this, liberation from the ventilator and its ancillary tubing has yielded improvements in quality of life and a reduction in the frequency of respiratory infections over the past 4 years for both patients.ConclusionsThe patients in this case report derived significant benefit from DES, however, the lack of physiological responsiveness, particularly in quadriplegic patients, and the open loop design requiring repeated manual adjustment are ongoing issues. These systems require external components and frequent battery changes due to high energy demands. Those interested in this technology should expect a steep learning curve. Despite these limitations, with careful patient selection, DES has the potential to make a positive contribution to each patient’s quality of life.

BackgroundFood labelling policy has become increasingly important in public health due to the rising burden of diet-related diseases. This study examines the compliance of pre-packaged foods sold in Nigerian markets with national food labelling guidelines.MethodsA total of 883 pre-packaged foods from broad categories were purposively enlisted from selected Nigerian stores and supermarkets. Food label information was evaluated against eleven (11) requirements stipulated by the National Agency for Food and Drug Administration and Control (NAFDAC) and components of the International Network for Food and Obesity/Non-communicable Diseases Research, Monitoring and Action Support (INFORMAS). Descriptive statistics and multiple linear regression were applied to assess compliance levels and their associated determinants.ResultsThe majority (>70.0%) of the pre-packaged foods complied with key labelling requirements except quantitative ingredient declaration (39.1%) as well as nutrient declaration of priority (56.5%), and non-priority (38.1%) nutrients. Overall, a mean food label compliance score of 9.19 + 1.43 out of a possible 11.0 was recorded. The inclusion of supplementary nutrition information and the declaration of non-priority nutrients in pre-packaged foods were each significantly (p < 0.01) associated with approximately a 0.50-point higher compliance score with national food labelling guidelines than pre-packaged foods lacking this information.ConclusionHigh compliance with the guidelines was reported; however, the declarations of nutrient and quantitative ingredients were not sufficiently met. Prioritizing food labelling in policy formulation, alongside targeted support for food manufacturers particularly local producers will help address existing gaps across the food compliance spectrum.

Gambling related harms are vast and varied. There is evidence that gambling is associated with increased risk of suicidal ideation and attempts. Our aim was to identify and profile individuals who died by suicide and had gambling documented in their coronial file. The Irish Probable Suicide Death Study dataset contains all (n=3,625) coroner and research-determined suicide deaths between 2015 and 2020. It was systematically searched to identify all deaths where gambling was recorded in coroner's files. Relevant data were extracted and included in a new database for further qualitative-driven analysis. Long-term distal (or chronic) and short-term proximal (or acute) risk factors were used as a framework for the analysis of the data. Gambling was recorded in 23 coroners' files, representing 0.6% of all suicides during the six-year period. Males were overrepresented and less than half were in employment at the time of death. Distal risk factors included co-occurring mental health conditions (notably mood disorders), a history of drug and alcohol dependency, past suicide intent and/or behaviour, and exposure to suicide. Key proximal risk factors included acute mental health symptoms, financial issues, interpersonal problems, intoxication, and recent stressful life events. We found that 23 people who died by suicide had gambling documented in their coronial file between 2015 and 2020. Numerous socioeconomic factors, interpersonal issues, and mental health conditions including addiction were also present at the time of death. The numbers in this study are likely an underrepresentation and support the need for improvements in data collection.

ABSTRACT Experiences of loss and change following acquired brain injury (ABI) are frequent and multi-contextual, yet the long-term experiences of people with ABI are not well understood. This study explored the experiences of intrapersonal loss, grief and change in people with ABI, a decade after their injury. Twelve adults with ABI were interviewed 10–13 years post-injury. Using interpretative phenomenological analysis, we identified four overarching themes: a dawning realization of the impact of injury; loss of personhood; loss and liminality; and learning to live with loss and grief. Our findings indicate that in the decade following ABI, people continue to develop awareness of the impact of their injury and experience oscillating acceptance towards enforced changes. Participants reported a diminished sense of agency and autonomy in how they were perceived by and interacted with following injury. Additionally, identity may be lost, suspended, and renegotiated. Findings suggest dynamic, active, and flexible coping strategies that continue to be present over the long term. Considering the persistent nature of the injury and the evolving needs of the individual, a longer term view of rehabilitation outcomes may be required, contextualised by relational and intrapersonal challenges that may present over the longer term.

Abstract The partnership between music therapy and speech-language pathology is gaining recognition as an effective approach in the rehabilitation of young children with acquired communication impairments (ACIs). Yet, there remains a notable gap in understanding the distinctive contributions and challenges inherent in this collaborative practice. This study explored the perspectives of music therapists (MTs) and speech-language pathologists (SLPs) regarding the unique role of this collaborative effort, the elements of successful collaboration, and the methods implemented by clinicians to evaluate outcomes. Semi-structured interviews were conducted with nine pairs of MTs and SLPs in rehabilitation facilities across seven countries. These interviews were analyzed thematically using Van Manen’s approach to hermeneutic phenomenology. Three themes arose from the data: (a) the role of collaborative music therapy and speech-language pathology, (b) building blocks of successful collaboration, and (c) evaluating collaborative practices. This collaboration fosters a unified strategy aimed at achieving shared language and communication goals. By combining their distinct expertise, MTs and SLPs can address the complex and varied needs of children with ACIs more effectively. However, further research is essential to comprehensively understand the functional outcomes arising from such collaborative endeavors in pediatric ACIs. This is crucial for validating the efficacy and significance of this approach in bolstering language and communication skills and advocating for its wider integration within rehabilitation services.

Following Spinal Cord Injury (SCI), 53% of people develop neuropathic pain (NP). NP can be more debilitating than other consequences of SCI, and a persistent health issue. Pharmacotherapies are commonly recommended for NP management in SCI, although severe pain often remains refractory to these treatments in many sufferers. Furthermore, poor medication adherence exists, stemming from unacceptable side-effects and fear of dependency.Sensorimotor stimulation using active walking with robotic assistance has not been well studied in NP after SCI, despite convincing locomotor-based pre-clinical studies, identifying prevention and reversal of NP.Our primary aim is to assess the impact of exoskeleton-based walking on NP intensity and interference after SCI and examine feasibility outcomes for progression to a definitive trial. This is a phase 2 single-blinded, randomised feasibility study. It will test the feasibility and acceptability of exoskeleton-based walking 3 times per week for 12 weeks (intervention), as a mechanistic-based intervention for NP after SCI. The comparator will be an equally dosed, blended relaxation programme devoid of motor imagery prompts. 40 participants with moderate-to-severe NP post SCI will be recruited and randomised to intervention and comparator groups.The primary outcomes are feasibility outcomes for progression to definitive trial which include recruitment and retention rates, adverse events and acceptability of the intervention.Secondary outcomes explore changes in NP intensity and interference as measured by the International Spinal Cord Injury Pain Basic Data Set 3.0 (ISCIPBDS) at baseline, post-intervention (week 13) and at 6-month follow-up. There is a need to explore non-pharmacological management of NP after SCI. The findings of this feasibility trial will inform the development of a future multicentre, international RCT. NCT06463418, 08/07/2024, https://clinicaltrials.gov/study/NCT06463418.

IntroductionPatient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory‐based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study.MethodsSemi‐structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically.FindingsNine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab‐based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research.ConclusionsWhile traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work.Patient or Public ContributionThis study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co‐authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

Background: Approximately 480 people annually in Ireland are diagnosed with a primary brain tumour. Brain tumours are a heterogeneous group of conditions, varying in histopathology, location, and progression. A consistent feature is neurological impairment, which can lead to profound effects on physical and cognitive function. There is evidence that people with brain tumours can benefit from rehabilitation, but pathways are poorly described, and no best practice is defined. This leads to significant unmet need. The aim of this study is to understand the rehabilitation needs of people diagnosed with a brain tumour in Ireland, and gain insight to inform policy and practice. Methods: A prospective, mixed methods study with embedded action research will be conducted. Patients (n=122) with a new diagnosis of primary brain tumour, and optionally, a nominated carer or family member, will be recruited through a national neuro-oncology service. Rehabilitation need (Mayo-Portland Adaptability Inventory), quality of life (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Brain Cancer Module, EuroQol-5D-5L), healthcare utilisation and, optionally, carer needs (Carer Support Needs Assessment Tool) will be assessed at four, eight and 12 months post diagnosis. An embedded qualitative study will invite 30 patients and carers to a semi-structured interview to explore their lived experience of rehabilitation needs and services following brain tumour diagnosis. Finally, using an Action Research approach, healthcare professionals involved in caring for people with brain tumours will be invited to participate in co-operative inquiry groups, to reflect on emerging aggregate findings and identify actions that could be undertaken while the study is underway. Conclusions: By understanding rehabilitation need, the findings will help healthcare professionals and health service providers understand how to prioritise the supports required and encourage policy makers to adequately resource neurorehabilitation to meet the needs of people with a brain tumour diagnosis.

Abstract Study DesignQualitative studyObjectiveTo explore the perspectives of preclinical spinal cord researchers and clinicians involved in the treatment of spinal cord injury on patient and public involvement (PPI) in preclinical research.SettingPreclinical spinal cord injury research.MethodsSemi-structured interviews were conducted online to collect data that was analysed thematically.FindingsTwenty-two participants (11 clinicians and 11 preclinical researchers) were interviewed. Participants recognised the value of PPI in improving the relevance of preclinical spinal cord research and providing a source of motivation for lab-based research. The perceived distance between preclinical research and the day-to-day experiences of PPI contributors was identified as a major barrier. Inclusive practices and the highly networked and motivated community of people affected by spinal cord injury were noted as facilitators. Building strong partnerships was considered essential for successful PPI.ConclusionsWhile PPI has traditionally been more commonly associated with clinical research, participants identified the potential benefits of PPI in preclinical spinal cord research to provide context and improve research relevance and impact. Preclinical researchers should explore how PPI can be incorporated in their work.