The recognition, assessment and perceptions of total pain in people with profound intellectual disabilities: A mixed methods systematic review.

BACKGROUND: People with profound intellectual disabilities are a population with complex comorbidities. Total pain recognises the interconnectedness of aspects of pain; social, psychological, physical, emotional, spiritual. Pain is under-recognised due to communication challenges and carers perceptions. This review's purpose is to synthesise current literature and provide guidance for future research and care. METHODS: Five databases were searched in this mixed methods systematic review (Cinahl, Medline, Psycinfo, Web of Science, Scopus). Articles retrieved were reported via a PRISMA flow diagram. Quality appraisal utilised the mixed methods appraisal tool (MMAT). A convergent qualitative design was the method of data synthesis. RESULTS: Data from 16 included articles generated four themes; Absent voices, reductionist assessment, pain intensity, valuing expertise. Data included physical pain only. CONCLUSION: Multifaceted pain needs inclusion in research. Assessment must consider the unique expressions of pain by individuals with profound intellectual disabilities. A sharing of expertise may improve pain care.

Experiences of residents, family members and staff in residential care settings for older people during COVID-19: A mixed methods study.

AIM: The aim of this study was to explore the COVID-19 pandemic as it was experienced by people on the front line in residential care settings for older people in the Republic of Ireland (ROI). BACKGROUND: The COVID-19 pandemic had a disproportionate effect in residential care settings for older people in Ireland. METHODS: A two-phased mixed methods study was conducted, consisting of an online survey administered shortly after the first wave of the virus to staff, residents and family members and one-to-one interviews with family members shortly after wave 2 of the virus. RESULTS: Isolation, loss of connectedness as well as a reduction in the level/quality of care provision led to significant adverse impacts for both residents and their families. Staff reported high levels of stress, trauma and burnout. Family input to care was suspended, with adverse consequences. CONCLUSION: The pandemic had an extremely adverse impact on residents, family members and staff in care settings for older people. IMPLICATIONS FOR NURSING MANAGEMENT: Strategies to ensure that residents' physical, emotional and social needs and staffs' professional and personal needs are appropriately supported during future waves of the pandemic should now be implemented.

Huddling as an Academic Quality Improvement Initiative.

ABSTRACT: A huddle is described as a tight group gathered together to talk privately for the purpose of reviewing performance and engaging in future planning. Although huddles are described as an effective communication tool to enhance patient safety in hospital settings, little is known about their use in academe. This article describes a quality improvement initiative involving weekly huddles of faculty teaching medical/surgical nursing and provides preliminary findings after one year.

Healthcare providers' views and experiences of non-specialist palliative care in hospitals: A qualitative systematic review and thematic synthesis.

BACKGROUND: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. AIM: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals. DESIGN: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework. DATA SOURCES: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. RESULTS: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses - a Different Lens'. CONCLUSIONS: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.

Non-specialist palliative care: A principle-based concept analysis.

BACKGROUND: Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted. AIM: To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care. DESIGN: The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care. DATA SOURCES: The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken. CONCLUSION: Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

Comparison of Two Assessment Tools for Hospitalized Subjects With Asthma.

BACKGROUND: Pediatric Asthma Assessment tools used to guide the weaning of inhaled therapies during inpatient hospitalization require further evaluation and validation. This study aimed to compare 2 asthma assessment tools: an asthma scale versus an asthma score. METHODS: A prospective, physician-blinded, comparison study was conducted in 2 separate 6-week phases of patients > 2 y old admitted to a tertiary care children's hospital with status asthmaticus between July and November 2014. The asthma scale categorized 5 components (oxygen, auscultation, dyspnea, breathing frequency, and pulse oximetry) into 1 of 3 respiratory assessments: mild, moderate, or severe. The asthma score used a sum of the components, resulting in a score of 1-15. Study tool predictability was measured using a metric based on hours on continuous albuterol, with area under the curve ≥ 0.8 indicating good predictability. Agreement between clinicians was measured using the Cohen kappa statistic. Study tool clinical correlation was measured using Spearman coefficient. Usability was evaluated using web-based surveys. RESULTS: Phase 1 included 1,971 assessments (97 unique subjects), whereas phase 2 included 607 assessments (69 unique subjects). Using the continuous albuterol metric, predictability of the asthma scale had an area under the curve of 0.62 versus the asthma score area under the curve of 0.80. Agreement early in hospitalization for the asthma scale was kappa = 0.34 (95% CI 0.18-0.5; n = 84) versus kappa = 0.55 (95% CI 0.35-0.76; n = 44) for the asthma score. Agreement late in hospitalization for the asthma scale was kappa = 0.38 (95% CI 0.17-0.59; n = 66) versus kappa = 0.41 (95% CI 0.13-0.69; n = 33) for the asthma score. Clinical correlation for the asthma scale (no. = 1,908) was r = 0.57 (P < .001) versus r = 0.80 (P < .001) for the asthma score (no. = 558). Mean asthma scale usability was 3.38 versus 3.68 for the asthma score. CONCLUSIONS: The asthma score showed better clinical predictability and clinical correlation compared to the asthma scale. Numerical scores provided more objective assessments compared to categorical scores. Validated scoring tools such as the asthma score are crucial to the success of management of inpatient asthma care.

Functional capacity in children and young adults with sickle cell disease undergoing evaluation for cardiopulmonary disease.

Although cardiopulmonary disease is associated with decreased functional capacity among adults with sickle cell disease (SCD), its impact on functional capacity in children with SCD is unknown. We evaluated 6-min walk (6MW) distance in 77 children and young adults with SCD undergoing screening for cardiopulmonary disease. Of 30 subjects who also underwent cardiopulmonary exercise testing, we found evidence for decreased exercise capacity in a significant proportion. Exercise capacity was related to baseline degree of anemia and was significantly lower in subjects with a history of recurrent acute chest syndrome. We found that 6MW distance adjusted for weight and body surface area was shorter in subjects with restrictive lung disease but that only 6MW adjusted for weight remained significantly shorter when we controlled for baseline hemoglobin. Exercise capacity was not significantly different in subjects with and without cardiopulmonary disease. We conclude that restrictive lung disease is associated with shorter 6MW distances in children and young adults with SCD, but that variables associated with decreased exercise capacity, other than anemia, remain unclear. Our study underscores the importance of further delineating the direct pathophysiologic processes that contribute to decreased exercise capacity observed among individuals with SCD and cardiopulmonary disease.

Pediatric obesity, metabolic syndrome, and obstructive sleep apnea syndrome.

The prevalence of obesity in the pediatric population has dramatically increased in the last 30 years. While the adverse health effects of obesity have long been recognized in adults, many of these complications are now understood to begin in early childhood. Obese children and adolescents are significantly more likely than their peers of healthy weight to suffer from obstructive sleep apnea and metabolic syndrome. In turn, affected individuals may experience myriad serious clinical sequelae; neuro-cognitive, psychiatric, cardiovascular, and endocrinologic complications have each been extensively documented. Thus, the spectrum of obesity-related disease represents a serious but preventable threat to personal and family wellness; additionally, it is a source of considerable health care expenditure and represents a national and international health crisis. The optimal care of these patients will be best achieved through the pediatric health care provider's timely recognition of these clinical problems and knowledge of appropriate intervention strategies.

Successful use of plasmapheresis for granulomatosis with polyangiitis presenting as diffuse alveolar hemorrhage.

Diffuse alveolar hemorrhage (DAH) is uncommon in pediatric patients and is a rare presenting sign of granulomatosis with polyangiitis (GPA). We present the case a 14-year-old girl who presented with respiratory failure secondary to DAH as the initial presenting sign of GPA. Her clinical course improved after initiation of plasmapheresis therapy and she is now in clinical remission.

Tricuspid regurgitant jet velocity elevation and its relationship to lung function in pediatric sickle cell disease.

Concerns about the morbidity and mortality associated with tricuspid regurgitant jet velocity (TRJV) elevation, which may indicate pulmonary hypertension (PHT), in adults with sickle cell disease (SCD) have prompted growing interest in screening the pediatric sickle cell population. The goals of our study were to estimate the prevalence of TRJV elevation and determine its relationship to pulmonary function in children and young adults with SCD at baseline. Seventy-eight subjects (10-24 years old) with SCD underwent prospective screening by Doppler echocardiogram (ECHO), complete lung function evaluation, and laboratory testing as part of standard care at steady state. Tricuspid regurgitation was quantifiable in 68/78 (87%) subjects and peak TRJV was > or =2.5 m/sec in 26/78 (33.3%) evaluated. The frequency of obstruction, restriction, or abnormal gas exchange found on lung function evaluation was not significantly different in subjects with and without TRJV elevation. However, significant inverse correlations were observed between TRJV and both % predicted forced vital capacity (FVC) (r = -0.29, P = 0.022) and oxygen saturation (r = -0.26, P = 0.036). When compared to subjects without TRJV elevation, subjects with TRJV elevation had significantly lower % predicted forced expiratory volume in 1 sec (FEV(1)) (78.9 +/- 14.4 vs. 86.6 +/- 13.0%, P = 0.023), FVC (82.8 +/- 14.1 vs. 90.7 +/- 12.9%, P = 0.017), and oxygen saturation (95.8 +/- 3.2 vs. 97.5 +/- 2.4%, P = 0.016). We found that the combination of low hemoglobin and low % predicted FVC best predicted TRJV elevation (chi(2) = 17.05, P = 0.001) in our cohort, correctly identifying 70% of cases and resulting in positive and negative predictive values of 60 and 74%, respectively. We conclude that in this young population with SCD, TRJV elevation that is not significantly associated with abnormal lung function is common at baseline.