Significant Physical Disabilities Research Articles

The lived experience: Nurses' experience of caring for patients with a traumatic spinal cord injury

BackgroundNurses are involved in delivering care for patients following acute traumatic spinal cord injury throughout the entire care journey. An injury of this type is significant for the individual and their family and can be challenging for nurses delivering care for patients with life changing injuries, especially for nurses new to this setting. There is a lack of research that examines the experience of nurses caring for these patients in the acute setting. MethodA hermeneutic phenomenological approach was used to understand the experience of nurses caring for patients in the acute setting who had sustained a traumatic spinal injury with associated neurological deficit. Using the phenomenological approach guided by the insight of Gadamer and Max Van Manen, participants with a broad range of experience were recruited and interviewed. The responses were transcribed into a text and subjected to hermeneutic analysis. Burnard's (1991) 14-step process and the hermeneutic approach were used to interpret and understand the phenomenon of interest. ConclusionThe study highlights the experience and challenges of providing care to these individuals. Although patients had significant physical disabilities and were often dependent physically, the nurses' concerns were directed more towards fulfilling their psychological needs. Nurses identified grieving patients and felt their role was to provide realistic hope to motivate them. They felt an internal tension regarding desensitisation towards their patients, but this was often an internal protective mechanism to deal with the significance of the events surrounding these patients. Nurses new to this setting took time to learn the routines and manage the unique challenges effectively. Caring for these patients gave the nurses the opportunity to understand their patients and their families, and appreciate that both groups will fluctuate in their behavior throughout the acute process, as they adjust to grief and loss.

From Access to Communion: Beyond the Social Model

ABSTRACTThe author discusses the public policy implications of current models of disability, arguing that the Americans with Disabilities Act represents the shift from medical to social models and that this shift has resulted in significant progress toward social and economic inclusion for those with disabilities. Yet this vision of society remains incomplete, as the current emphasis on individual accommodation has not led to fundamental social transformation. Drawing on resources in contemporary theologies of disability, the witness of L'Arche, and the author's experience as the parent of a child with significant intellectual and physical disabilities and complex medical needs, the essay calls those with and without disabilities to a life of communion and mutual giving and receiving.

Biomechanical analysis of brachial plexus injury: Availability of three-dimensional finite element model of the brachial plexus.

Adult brachial plexus injuries frequently lead to significant and permanent physical disabilities. Investigating the mechanism of the injury using biomechanical approaches may lead to further knowledge with regard to preventing brachial plexus injuries. However, there are no reports of biomechanical studies of brachial plexus injuries till date. Therefore, the present study used a complex three-dimensional finite element model (3D-FEM) of the brachial plexus to analyze the mechanism of brachial plexus injury and to assess the validity of the model. A complex 3D-FEM of the spinal column, dura mater, spinal nerve root, brachial plexus, rib bone and cartilage, clavicle, scapula, and humerus were conducted. Stress was applied to the model based on the mechanisms of clinically reported brachial plexus injuries: Retroflexion of the cervical, lateroflexion of the cervical, rotation of the cervical, and abduction of the upper limb. The present study analyzed the distribution and strength of strain applied to the brachial plexus during each motion. When the cervical was retroflexed or lateroflexed, the strain was focused on the C5 nerve root and the upper trunk of the brachial plexus. When the upper limb was abducted, strain was focused on the C7 and C8 nerve roots and the lower trunk of the brachial plexus. The results of brachial plexus injury mechanism corresponded with clinical findings that demonstrated the validity of this model. The results of the present study hypothesized that the model has a future potential for analyzing pathological conditions of brachial plexus injuries and other injuries or diseases, including that of spine and spinal nerve root.

End of life care for glioblastoma patients at a large academic cancer center.

Glioblastoma (GBM) is a universally fatal disease, complicated by significant cognitive and physical disabilities, inherent to the disease course. The purpose of this study was to retrospectively analyze end-of-life care for GBM patients at an academic center and compare utilization of these services to national quality of care guidelines, with the goal of identifying opportunities to improve end-of-life care. Single center retrospective cohort study of GBM patients at Johns Hopkins Hospital (JHH) between 2009 and 2014, using electronic medical records and hospice records. Comprehensive medical record review of 100 randomly selected patients with GBM, who were actively treated at JHH. Secondary analysis of all JHH GBM patients (n = 45) who received hospice care at Gilchrist Services, our largest provider, during this time period. Of 100 patients, 76 were referred to hospice. Despite the poor survival and changes in mental capacity associated with this disease, only 40% of individuals had documentation of code status and only 17% had any documentation of advance directives (ADs). None had documentation by a health care provider of a formal symptom, psychosocial, or spiritual assessment at greater than 50% of clinic visits. Only 17% used chemotherapy in their last month of life. 37% were hospitalized in the last month of life for an average of 9 days. Of the Gilchrist Services patients, the median length of stay in hospice was 21 days and 64% of these patients died in their residence with hospice services. Documentation of palliative care and end-of-life measures could improve quality of care for GBM patients, especially in the use of ADs, symptom, spiritual, and psychosocial assessments, with earlier use of hospice to prevent end-of-life hospitalizations.

Are intensive data collection methods in pain research feasible in those with physical disability? A study in persons with chronic pain and spinal cord injury.

Intensive repeated measures data collection procedures, such as ecological momentary assessment (EMA) and end-of-day (EOD) diaries, are becoming more prominent in pain research. Existing data on the feasibility of such methods is encouraging; however, almost nothing is known about feasibility in clinical populations with significant physical disabilities. Research methodology feasibility is crucial to the inclusion of individuals with physical disability in pain research given the high prevalence and impact of pain in these populations. The aim of this study was to examine study compliance, protocol acceptability, and reactivity of intensive data collection methods in adults with chronic pain and spinal cord injury (SCI). Secondary analysis of data from a 7-day EMA and EOD diary study in a sample of 131 community dwelling adults with SCI. Results showed rates of missing data ranged from 18.4 to 22.8% across measures. Participant compliance was related to time of day/presence of audible prompts, mobility aid use, race, and baseline levels of pain and pain interference, with more missing data at wake and bedtimes/no prompts, and for those who used hand-held mobility devices, identified as black/African American, and/or reported higher baseline pain and pain interference. Participants rated the study methodology as generally highly acceptable and expressed willingness to participate in similar studies of much longer duration. There was no evidence of reactivity, defined as temporal shifts in pain or pain interference ratings. Overall, intensive pain data collection is feasible in persons with SCI with no evidence that the methodology impacts pain intensity or pain interference ratings.

Interventional therapy indications in the elderly - are they different?

The prevalance of cardiovascular disease increases with age and cardiovascular disease is the leading cause of death in adults >75 years of age. However many trials have excluded older patients. So we don't have randomized trials but only limited subgroup analysis or registries for older patients. In general the indications for intervention and revascularization are not different in elderly patients. But complex co-morbidities, significant physical or cognitive disabilities can change our decision. Complex Coronary anatomy and the complications of the procedure is high in older patients. Long term mortality is similar in patients treated with Coronary artery bypass graft surgery or percutaneous coronary intervention, but re-intervention is higher in coronary intervention group. Invazive approach is superior to conservative treatment even in very elderly patients with acute coronary syndrome. We need randomized trials including mainly older patients in this era.

Glaucoma domiciliary service by optometrist.

Approximately 10% of UK blindness registrations are attributed to glaucoma[1]. The risk of glaucoma increases with age and it is estimated that the prevalence of chronic open angle glaucoma (COAG) is about 10% in white Europeans who are older than 70. There are an estimated 24.4 million people aged over 40 in England and around 489 000 people are currently affected by COAG. These numbers are likely to increase with increasing life expectancy[1]. With aging, there is an increase in prevalence of chronic diseases such as dementia, Alzheimer's disease and osteoarthritis, leading to severe frailty, disability and dependence for their basic needs and care[2]–[3]. The demographic profile of the South West of England shows it one third of it is population living in rural areas (31.3%) which is highest among all English regions. Also, the region's population is oldest with 4.4% people aged over 75, of whom 33% are older than 90. The life expectancy of men and women is also amongst the highest of all counties in the United Kingdom[4]. People diagnosed with COAG are managed by the hospital eye service and lifelong follow-up is normally needed so that any progression of glaucomatous damage can be detected and managed. Sight loss due to glaucoma cannot be restored, and therefore controlling the condition carefully is crucial to maintaining sight. People with severe physical and/or mental disability often reside in care homes and find journeys to hospital stressful, and in many cases not possible, even if appropriate transportation is available. Provisions of community hospitals and mobile clinic reviews has reduced the need to travel to main hospitals, however some patients are still not able to attend. To overcome this problem, a new care pathway called the glaucoma domiciliary service (GDS), managed by optometrists, a central coordinator and consultant glaucoma ophthalmologists was designed and commissioned at the Royal Devon and Exeter (RD&E) Foundation Trust. Glaucoma patients who are unable to attend normal follow-up clinics due to significant physical and/or mental disabilities are offered GDS at their residence. We present the service framework and outcome of our experience of GDS.

Multiple organ dysfunction and systemic inflammation after spinal cord injury: a complex relationship.

Spinal cord injury (SCI) is a devastating event that results in significant physical disabilities for affected individuals. Apart from local injury within the spinal cord, SCI patients develop a variety of complications characterized by multiple organ dysfunction or failure. These disorders, such as neurogenic pain, depression, lung injury, cardiovascular disease, liver damage, kidney dysfunction, urinary tract infection, and increased susceptibility to pathogen infection, are common in injured patients, hinder functional recovery, and can even be life threatening. Multiple lines of evidence point to pathological connections emanating from the injured spinal cord, post-injury systemic inflammation, and immune suppression as important multifactorial mechanisms underlying post-SCI complications. SCI triggers systemic inflammatory responses marked by increased circulation of immune cells and pro-inflammatory mediators, which result in the infiltration of inflammatory cells into secondary organs and persistence of an inflammatory microenvironment that contributes to organ dysfunction. SCI also induces immune deficiency through immune organ dysfunction, resulting in impaired responsiveness to pathogen infection. In this review, we summarize current evidence demonstrating the relevance of inflammatory conditions and immune suppression in several complications frequently seen following SCI. In addition, we highlight the potential pathways by which inflammatory and immune cues contribute to multiple organ failure and dysfunction and discuss current anti-inflammatory approaches used to alleviate post-SCI complications. A comprehensive review of this literature may provide new insights into therapeutic strategies against complications after SCI by targeting systemic inflammation.

Knowledge Gaps in Cardiovascular Care of Older Adults: A Scientific Statement from the American Heart Association, American College of Cardiology, and American Geriatrics Society: Executive Summary

The incidence and prevalence of most cardiovascular disorders increase with age, and cardiovascular disease (CVD) is the leading cause of death and major disability in adults aged 75 and older. Despite the effect of CVD on quality of life, morbidity, and mortality in older adults, individuals aged 75 and older have been markedly underrepresented in most major cardiovascular trials, and virtually all trials have excluded older adults with complex comorbidities, significant physical or cognitive disabilities, frailty, or residence in nursing homes and assisted living facilities. As a result, current guidelines are unable to provide evidence-based recommendations for diagnosis and treatment of older adults typical of those encountered in routine clinical practice. The objectives of this scientific statement are to summarize current guideline recommendations as they apply to older adults, identify critical gaps in knowledge that preclude informed evidence-based decision-making, and recommend future research to close existing knowledge gaps. To achieve these objectives, a detailed review was conducted of current American College of Cardiology/American Heart Association (ACC/AHA) and American Stroke Association (ASA) guidelines to identify content and recommendations that explicitly targeted older adults. A pervasive lack of evidence to guide clinical decision-making in older adults with CVD was found, as well as a paucity of data on the effect of diagnostic and therapeutic interventions on outcomes that are particularly important to older adults, such as quality of life, physical function, and maintenance of independence. Accordingly, there is a critical need for a multitude of large population-based studies and clinical trials that include a broad spectrum of older adults representative of those seen in clinical practice and that incorporate relevant outcomes important to older adults in the study design. The results of these studies will provide the foundation for future evidence-based guidelines applicable to older adults and enhance person-centered care of older individuals with CVD in the United States and around the world.

The prevalence of leprosy in school-students and evaluation of school-based screening for leprosy: A Systematic Review

Leprosy is a Neglected Tropical Disease (NTD) causing significant physical and functional disabilities around the world. The objective of this systematic review was to evaluate school-based leprosy screening as a means of identifying early leprosy cases. Using a structured search method, 30 suitable publications were identified. Whilst all studies included in this review were found to identify cases of leprosy through school-based screening, sample sizes were high and numbers detected were small, raising concerns about the feasibility and sustainability of school-based screening as a stand-alone intervention for leprosy detection. For school-based screening programmes to become a sustainable intervention, the inclusion of both capacity building and health education components into school-based screening and intervention programmes should be further explored. More research is needed to consider alternate methods which maximise the efficiency of school-based approaches in the early case detection of leprosy. Also, cases found at school may be used to find further active cases via family and friends. School-based screening could be an effective solution for the early identification of leprosy particularly in areas of high endemicity, however to date there is limited data on its effectiveness compared with other interventions.

Knowledge Gaps in Cardiovascular Care of the Older Adult Population

The incidence and prevalence of most cardiovascular disorders increase with age, and cardiovascular disease is the leading cause of death and major disability in adults ≥75 years of age; however, despite the large impact of cardiovascular disease on quality of life, morbidity, and mortality in older adults, patients aged ≥75 years have been markedly underrepresented in most major cardiovascular trials, and virtually all trials have excluded older patients with complex comorbidities, significant physical or cognitive disabilities, frailty, or residence in a nursing home or assisted living facility. As a result, current guidelines are unable to provide evidence-based recommendations for diagnosis and treatment of older patients typical of those encountered in routine clinical practice. The objectives of this scientific statement are to summarize current guideline recommendations as they apply to older adults, identify critical gaps in knowledge that preclude informed evidence-based decision making, and recommend future research to close existing knowledge gaps. To achieve these objectives, we conducted a detailed review of current American College of Cardiology/American Heart Association and American Stroke Association guidelines to identify content and recommendations that explicitly targeted older patients. We found that there is a pervasive lack of evidence to guide clinical decision making in older patients with cardiovascular disease, as well as a paucity of data on the impact of diagnostic and therapeutic interventions on key outcomes that are particularly important to older patients, such as quality of life, physical function, and maintenance of independence. Accordingly, there is a critical need for a multitude of large population-based studies and clinical trials that include a broad spectrum of older patients representative of those seen in clinical practice and that incorporate relevant outcomes important to older patients in the study design. The results of these studies will provide the foundation for future evidence-based guidelines applicable to older patients, thereby enhancing patient-centered evidence-based care of older people with cardiovascular disease in the United States and around the world.

Balancing Early Aggression Against Risk of Progression in Multiple Sclerosis.

Multiple sclerosis is a chronic demyelinating disease characterized by focal and diffuse inflammation of the central nervous system resulting in significant physical and cognitive disabilities. Disease-modifying therapies targeting the dysfunctional immune response are most effective in the first few years after disease onset, indicating that there is a limited time window for therapy to influence the disease course. No evidence of disease activity is emerging as a new standard for treatment response and may be associated with improved long-term disability outcomes. An aggressive management strategy, including earlier use of more potent immunomodulatory agents and close monitoring of the clinical and radiologic response to treatment, is recommended to minimize early brain volume loss and slow the progression of physical and cognitive impairments in patients with relapsing-remitting multiple sclerosis.

Abstract 2892: A MYC-driven medulloblastoma model derived from human induced pluripotent stem cells

Abstract Brain tumors are the most common cause of childhood oncological death, and medulloblastoma (MB) is the most common malignant pediatric brain tumor. Current MB treatments yield five-year survival rates of 60-70%, but usually result in significant neurological, intellectual and physical disabilities. Recent gene expression studies have identified four MB subgroups, many of which have unique clinical and histopathological features. Patients with Group 3 MB are more likely to have aggressive and invasive tumors with large cell/anaplastic histology, and have the worst prognosis. Group 3 MB is characterized by amplification and overexpression oncogenic transcription factor MYC, herein referred to as MYC-driven MB. Modeling MYC-driven MB is critical for developing and testing potential therapies for this highly aggressive MB. Recently, murine MYC-driven MB models have been developed using mouse neural stem cells (NSCs) or neuronal precursor cells (NPCs). But human MB models derived from individual-specific cells are still lacking. Human induced pluripotent stem cells (iPSCs) can be differentiated into various types of cells and hold great promise for developing individual-specific disease models. It is valuable to develop MB models using human iPSCs from both MB patients and unaffected persons. In comparison with mouse-cell-derived MB models, human-iPSC-derived MB models will provide a unique and high-impact platform not only for personalized drug discovery but also for studying the role of individual's distinctive genetic background in carcinogen sensitivity and MB susceptibility. Transcription factor Atoh1 governs the development of cerebellar granule neurons and is essential for MB formation. Here, we induced Atoh1 in human iPSCs to differentiate these cells into NPCs. We further infected these Atoh1-induced NPCs with lentiviruses encoding a stabilized form of MYC (MYCT58A) and dominant-negative p53 (DNp53). These NPCs generated aggressive tumors after being transplanted into mouse cerebellum. NPCs infected by DNp53 alone did not form tumors after 90 days. These MYC-driven tumors were comprised of poorly differentiated, medium to large size cells which showed nuclear molding, prominent nucleoli and numerous mitotic (Ki67+) and apoptotic (Cleaved-Caspase-3+) cells. These tumors also expressed early neuronal lineage marker (β-tubulin III). All these features closely mimic human Group 3 MB. Moreover, we also established neurosphere cultures from these MYC-driven tumors to enrich cancer stem-like cells that have the capability for long-term self-renewal and tumor initiation upon serial transplantations. In summary, we established a novel human-iPSC-drived cancer model for modeling MYC-driven MB. Our results support the feasibility to recapitulate human cancers using progenies derived from human iPSCs. The iPSC-derived MB model we established will facilitate mechanistic studies and drug testing for human aggressive MB. Citation Format: Jonathan Sagal, Charles G. Eberhart, Mingyao Ying. A MYC-driven medulloblastoma model derived from human induced pluripotent stem cells. [abstract]. In: Proceedings of the 106th Annual Meeting of the American Association for Cancer Research; 2015 Apr 18-22; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2015;75(15 Suppl):Abstract nr 2892. doi:10.1158/1538-7445.AM2015-2892

Preparing preschool teacher candidates for inclusion: impact of two special education courses on their perspectives

Successful implementation of inclusive practices depends mainly on teachers' attitudes towards children with special needs and their inclusion, and teachers' willingness to work with children with special needs in their classrooms. Experiences teacher candidates have during pre‐service stage might influence their perceptions towards children with disabilities and their inclusion. The purpose of this study was to examine the impact of two special education courses on (1) preschool teacher candidates' general attitudes towards inclusion, (2) their willingness to work with children with significant intellectual, physical and behavioural disabilities within inclusive classroom settings and (3) their level of comfort in interacting with children with disabilities. A four‐part survey was administered to participants four times throughout the study, once before and after each course. The survey package included (1) a demographic information form, (2) the Opinions Relative to the Inclusion of Students with Disabilities Scale, (3) an adapted version of the Teachers' Willingness to Work with Children with Severe Disabilities Scale and (4) the Interaction with Children with a Disability Scale. The results showed that both special education courses positively influenced teacher candidates' attitudes, willingness and comfort levels. However, impact of the second course focused on helping teacher candidates learn and apply instructional strategies to work with children with disabilities in inclusive classrooms was much larger. Implications of the study findings in relation to future research and practice are discussed.

Physically Disabled Adults’ Perceptions of Personal Autonomy

Despite the prominence of the concept of autonomy in the UN Convention on the Rights of Persons With Disabilities and within disability theory, the relevance of autonomy to occupational engagement is unclear. Using a qualitative, narrative approach, eight adults with significant physical disabilities engaged in iterative interviews exploring their life history and perception of autonomy in daily life. Interviews were transcribed verbatim and themed. Key themes that emerged were that participants valued autonomy differently; their perception of their own personal autonomy influenced both occupational choices and the meaning derived from occupational engagement. While some participants actively sought occupations in which they could make decisions, others preferred more supportive environments, yet all participants avoided situations in which their autonomy was undermined. Awareness of an individual's values regarding autonomy could assist occupational therapists to both select appropriate occupations for intervention and discuss the meaning derived from occupations, thereby enhancing client-centered practice.

Treatments for nail psoriasis: a systematic review by the GRAPPA Nail Psoriasis Work Group.

Nail involvement in psoriatic diseases causes significant physical and functional disabilities. Evaluating, measuring, and treating nail involvement is important in improving the health outcomes and quality of life among patients with psoriasis and psoriatic arthritis (PsA). We performed a systematic analysis of the literature on nail psoriasis to help inform an update of treatment recommendations by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA).

A poetry program for the very elderly—Narrative perspective on one therapeutic model

The focus of this report is a poetry program that the author has been conducting at a nursing home/short-stay rehabilitation facility for the past three and a half years. The program involves reading poetry to groups of very elderly residents who have significant mental and/or physical disabilities. This article includes a description of the program and the author's observations of its beneficial effects. Poetry readings were also given to individual seniors who have significant dementia. The therapeutic value of the program to the elders and to the person reading the poetry to the elders is discussed.

Prenatal diagnosis of cervical spinal cord compression in chondrodysplasia punctata brachytelephalangic type: A case report and literature review

Chondrodysplasia punctata brachytelephalangic type is a common subset of a heterogeneous group of chondrodysplasia punctata. Most affected children generally do not have significant physical disabilities; however, a small number of patients are at risk of cervical canal stenosis with cervical cord compression leading to serious morbidity and early mortality. Very little is known about the in utero manifestation of severe complications. We report an affected child in whom the Binder phenotype was found on antenatal ultrasound and cervical spinal cord compression on fetal magnetic resonance imaging. Prenatal diagnosis of chondrodysplasia punctata brachytelephalangic type and its complications are beneficial for timely, prompt medical intervention.

Generation n + 1: Projected numbers of babies born to women with PKU compared to babies with PKU in the United States in 2009

Newborn PKU screening has been available since the mid-1960s, and the first group of screened babies is now a complete reproductive cohort (age 15-44). Untreated maternal PKU (MPKU) often results in significant developmental and physical disabilities in exposed fetuses, and could potentially offset some or all of the benefits produced by newborn PKU screening and dietary treatment. Based on the age distribution of the United States population in 2009, and using different estimates of PKU frequency (1/10,000; 1/15,000; 1/20,000), the projected number of babies born to women with PKU was compared to the projected number of babies born with PKU. In 2009, there were about 62,000,000 women age 15-44, with a fertility rate of 66.7 births/1,000 women. Of these women, depending on the incidence of PKU, 3,097-6,195 were estimated to have PKU, and they would have delivered 207-413 babies. In that same year, the number of births was 4,118,055, which would have resulted in 206-412 babies with PKU. Thus, in the United States, at all estimates of PKU frequency, the number of babies exposed to MPKU is equal to the number of babies born with PKU. This ratio varies with the fertility rate but is not dependent on the incidence of PKU. The benefits of newborn PKU screening and treatment could be significantly curtailed if adequate resources, education, and funding are not available to follow and monitor women with MPKU and their babies.

A Friendship in Letters: The Correspondence of Judith Wright and Barbara Blackman

The exchange of letters between the poet Judith Wright and essayist Barbara Blackman extended over 50 years until Wright's death in 2000. It is recorded in a selection of over 300 letters, edited by Bryony Cosgrove, in Portrait of a Friendship (2007). Their correspondence has come to signify their friendship, especially because their circumstances meant that the two women rarely met face to face. The letters are rich with references to the public worlds of art and writing in which they participated (Barbara was married to the eminent painter Charles Blackman), as well as to the domestic terrain that was intensively inhabited by women in the years after the Second World War. Both were cultural activists as well, but while they shared a commitment to the conservation of the natural environment and to Aboriginal culture, Judith threw her energies into political campaigns for conservation and for Aboriginal rights, while Barbara inclined more to Jungian-inspired quietism and educative projects. Their correspondence is unique in that the two creative women were also living with significant physical disabilities: Barbara was blind and Judith deaf. For this reason, their letters prompt reflections on the capacities of certain technologies and social forms of epistolary communication.