The association of pain with gait spatiotemporal parameters in children with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder.

BACKGROUND: Children with hypermobility spectrum disorder/hypermobile Ehlers-Danlos syndrome (HSD/hEDS) have a high prevalence of chronic pain, which may influence gait dynamics. However, little is known about pain outcomes and their association with gait spatiotemporal parameters in children with HSD/hEDS. RESEARCH QUESTION: Does pain correlate with gait spatiotemporal parameters in children with HSD/hEDS? METHODS: Eighteen children with HSD/hEDS and eighteen typically developing (TD) children participated in the study. The current level of pain (0-10 on the numeric rating scale), modified Brief Pain Inventory, and Pain Catastrophizing Scale-Child version were implemented to assess pain in children with HSD/hEDS. All children completed a gait analysis at a self-selected speed. Mean and variability (measured using the coefficient of variation) of gait spatiotemporal parameters were analyzed. Gait parameters included stride length, stride time, gait speed, percent stance time, and step width. A Mann-Whitney U-test was used to compare the gait parameters between children with HSD/hEDS and TD children. Spearman correlations were used to examine the relationships between pain and gait spatiotemporal parameters in children with HSD/hEDS. RESULTS: Children with HSD/hEDS had a longer percent stance time compared to TD children (p = 0.03). Lower pain interference in relationships with other people was significantly associated with faster gait speeds (ρ = -0.55, p = 0.03). Children with HSD/hEDS also had greater pain interference during mobility (ρ = 0.5, p = 0.05) and going to school (ρ = 0.65, p = 0.01), which were significantly correlated with greater stride length variability. Greater pain interference during enjoyment of life was significantly associated with greater percent stance time variability (ρ = 0.5, p = 0.05). Greater pain catastrophizing was correlated with decreased step width variability in children with HSD/hEDS (ρ = -0.49, p = 0.05). SIGNIFICANCE: Pain interference and catastrophe were significantly associated with gait spatiotemporal variability. Our findings suggest that assessing pain-associated gait alterations may help understand the clinical features and gait kinematics of children with HSD/hEDS.

Pain Characteristics and Symptom Management in Children with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.

AIMS: This study aims to investigate pediatric hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) pain features and management strategies. METHODS: This is a mixed-methods, cross-sectional study design using patient-reported outcomes in 21 children diagnosed with hEDS/HSD. Children who reported bothersome pain were interviewed for pain features. The Child Activity Limitation Interview-21, the Brief Pain Inventory pain interference items, and the Functional Disability Inventory were used to investigate pain interference. To evaluate psychological symptoms regarding pain, the pediatric version of the Survey of Pain Attitude and the child version of the Pain Catastrophizing Scale were used. RESULTS: Nineteen children had bothersome pain and of them, eight children reported constant pain. The most frequently reported regions of pain were at the ankle (mild pain) and the back (moderate-to-severe pain). Children reported mild-to-moderate pain interference and believed medications were beneficial for their pain management. Nineteen children sought treatment and of those 16 children used to exercise and acetaminophen and 13 visited physicians as a means of treatment. Parents were overall satisfied with their child's treatment (13 out of 19). CONCLUSIONS: Sufficient awareness of pain-related symptoms and understanding of the treatment strategies in early childhood is needed to prevent deleterious consequences in adulthood.

Pain in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data.

BACKGROUND: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population. OBJECTIVES: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference. METHODS: Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥25 adults with CP and ≥1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted. RESULTS: In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78). Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5). CONCLUSIONS: This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally.

The development of an iPad application for the pain assessment of individuals with developmental disabilities and complex communication needs.

Aims: Develop a new pain assessment for youth with communication challenges. The Guard-Putzer Pain Assessment Domains (gPAD) mobile application (app) was designed and tested as a universally accessible way for youth, ages 7-12 years, with a developmental disability (DD) to express their pain experiences through self-report. Methods: A two-phase process developed the design for an app, created an interactive prototype, and tested its face validity and user interface. This work included a comprehensive scoping review of current assessments and pain apps as well as a survey to obtain descriptive data on the clinical practicality of the gPAD to guide the app design. Additionally, 15 therapists reviewed the gPAD assessment. Results: Thirteen respondents (87%) agreed to the statement that they would use the gPAD for this population. School-based practitioners seemed to highlight the most significant needs for the app. Conclusions: Advancement of this app could mainstream the assessment of pain in youth with DD, and other potential populations.

Does it make a difference? Evaluation of a Canadian poverty reduction initiative.

Program evaluation is an important aspect of any organization. The ability to reflect on past performance and plan for the future is essential to an organization's health and future growth. This exploratory study is part of a larger program evaluation initiative that examined the efficacy of a regionally based organization that provided funding to community groups to alleviate poverty. The purpose of the study was to explore testimonials provided by participants of the organization's funded programs, to determine if the participants were satisfied with the programs and the extent to which participants' perceptions are congruent with the goals of the organization. Content analysis was used to examine 3494 testimonials from 77 different agencies. Three overall themes were determined from the analysis: 1 Developing Social Networks, 2 Learning Comes in Various Forms, and 3 Developing Self-Efficacy. Findings from the testimonials suggest that the benefits of the programs are highly social and that connections with others are important, but also provide rich opportunities for learning new skills and knowledge, as well as gaining confidence and a sense of control. The findings from this analysis support one goal of the organization which is to engage people living in poverty in meaningful ways.

Where Does the Patient Fit? An Analysis of Word Use Within the Context of Interprofessional Collaborative Care.

Patient-centeredness is considered central to interprofessional collaborative patient care as a participatory, partnered approach between health care professionals and patients. Content analysis of 501 articles from the 1986, 1987, 1988, 1996, 2006, 2013, 2014, and 2018 volumes of a selected journal was undertaken. The purposes were to identify contexts in which the term patient was used in articles with a primary focus on interprofessional care and to identify trends in its usage. With Dilthey's ideas on language as a framework, patient and its variations in the articles were coded under five categories. Findings suggest that the term patient appears predominantly as a modifier for activities enacted by experts and a platform for the discussion of relationships among professionals. There is limited evidence that use of the term patient fits within the context of partnership, suggesting that the language in published interprofessional collaborative research and discussion is currently largely expert, not patient-centered.

Do Commonly Used Measures of Pain Intensity Only Reflect Pain Intensity in Youths With Bothersome Pain and a Physical Disability?

The objective of this cross-sectional study was to evaluate the extent to which non-pain intensity factors influence the ratings of pain intensity on two commonly used measures: the Wong-Baker Faces pain rating scale (FACES) and the Verbal Rating Scale (VRS) in a sample of youths with physical disabilities and bothersome pain. Study participants came from a convenience sample of 115 youths (age: X ¯ = 14.4 years; SD = 3.3), who participated in a survey on the impact of pain in young people with a physical disability. They were administered measures of pain intensity, pain catastrophizing, depressive symptoms, pain interference, and pain control beliefs. Zero-order correlation analyses were used to examine the associations among the pain intensity scores, while regression analyses were used to test the influence of the non-pain intensity factors on the pain intensity scores. Although pain intensity scores from all scales were significantly associated with one another, the correlations were moderate. Regression analyses showed that the FACES and VRS also reflect pain interference, in addition to pain intensity. The fact that the FACES and VRS ratings reflect more than pain intensity should be considered when selecting a pain measure. The results of this study also provide information to help interpret results after treatment.

Teaching and assessment strategies for nursing self-care competencies in Ontario's nursing education programs.

In Canada, nurses comprise half the healthcare employment sector, yet comparably, they are twice as likely to experience absenteeism due to occupational burnout. This issue is pronounced for entry-level nurses. The College of Nurses of Ontario (CNO) mandates professional practice standards and entry-level practice competencies; notably, these documents lack explicit performance expectations linked to nursing self-care. This lack of acknowledgment is reflected in what is known, which is little, about how self-care competencies are taught and assessed in nursing education programs. From a Program Director perspective, this study examined the strategies used to teach and assess self-care competencies in Ontario's nursing education programs. Survey results (n = 8), reported intention-action gaps highest (i.e., there is a need for increased teaching), in self-care competencies not mandated by the CNO (i.e., relationship, emotional, and spiritual self-care), whereas competencies mandated by the CNO (i.e., professionalism), were rated higher in relative teaching than importance. Given that self-care strategies (e.g. maintaining healthy interpersonal relationships and engaging in spiritual growth and mindfulness) have shown to be protective factors against workload stress, burnout, and job attrition, regulatory colleges need to consider mandating these self-care competencies within their professional practice standards and entry-level registered nurse practice guidelines.

The role of perceived family social support and parental solicitous responses in adjustment to bothersome pain in young people with physical disabilities.

PURPOSE: Family social support and parental solicitous responses have been hypothesised to play an important role in paediatric pain. However, research testing the hypothesised associations between these social domains and measures of adjustment to pain in youths with disabilities and chronic pain is non-existent. METHODS: About 111 youths with physical disabilities and bothersome pain were interviewed and asked to complete measures of average pain intensity, pain interference, family social support, parent solicitous responding, and catastrophising. RESULTS: Children's perceptions of pain-related solicitous responses from their parent/guardian were associated both with more pain interference and greater pain-related catastrophising; perceived social support was negatively associated with pain interference. CONCLUSIONS: The findings provide new information regarding the role that psychosocial factors have in predicting function and adjustment, and have important implications as to how youth with physical disabilities with pain might be most effectively treated. Implications for rehabilitation Little is known about the role of perceived family social support or parental solicitous responses in the adjustment to chronic pain in young people with physical disabilities. This study provides new and important findings that have significant theoretical and practical implications that could help to understand and manage function in these patients. Results show that it matters how parents respond to their children with disabilities who have pain, and raise the possibility that interventions which target these responses may result in significant benefits for the children.

Informed Strangers: Witnessing and Responding to Unethical Care as Student Nurses.

Nursing students occupy a unique perspective in clinical settings because they are informed, through education, about how patient care ought to happen. Given the brevity of placements and their "visiting status" in clinical sites, students are less invested in the ethos of specific sites. Subsequently, their perspectives of quality care are informed by what should happen, which might differ from that of nurses and patients. The purpose of this study was to identify predominant themes in patient care, as experienced by students, and the influence that these observations have on the development of their ethical reasoning. Using a qualitative descriptive approach in which 27 nursing student papers and three follow-up in-depth interviews were analyzed, three main themes emerged: Good employee, poor nurse; damaged care; and negotiating the gap. The analysis of the ethical situations in these papers suggests that students sometimes observe care that lacks concern for the dignity, autonomy, and safety of patients. For these student nurses, this tension led to uncertainty about patient care and their eventual profession.

A Power Experience: A Phenomenological Study of Interprofessional Education.

The purpose of this supplementary analysis of a hermeneutic phenomenological study of the experience of interprofessional collaboration for nursing and medical students was to explore the experience of power that was threaded throughout the original study. Seventeen students participated in guided, face-to-face conversations in the original study (Prentice, Engel, Taplay, & Stobbe, 2014). Through the processes of deductive analysis and inductive reasoning, 2 themes of power emerged from these research conversations: (a) complicated knowledge is power and (b) the power and silence of intimidation. These themes suggest that power and power differentials are significant factors in student interactions in interprofessional learning and have the potential to adversely affect these interactions. Students' perceptions of power need to be taken into account and addressed when planning and implementing interprofessional education events.

Pain extent and function in youth with physical disabilities.

BACKGROUND: The aim of this study was to increase our understanding of the role that spatial qualities of pain (location and extent) play in functioning, among youths with disabilities and chronic pain. METHODS: One-hundred and fifteen youths (mean age 14.4 years; SD ±3.3 years) with physical disabilities and chronic pain were interviewed and were asked to provide information about pain locations and their average pain intensity in the past week, and to complete measures of pain interference, psychological function and disability. Most of the participants in this sample were males (56%), Caucasian (68%), and had a cerebral palsy (34%) or muscular dystrophy (25%) problem. Most participants did not report high levels of disability ( [Formula: see text], SD ±9.5, range 0-60) or global pain intensity ( [Formula: see text], SD ±2.4, range 0-10). RESULTS: Pain at more than one body site was experienced by 91% of participants. There were positive associations between pain extent with pain interference (r = 0.30) and disability (r = 0.30), and a negative association with psychological function (r = -0.38), over and above average pain intensity. Additionally, pain intensity in the back (as opposed to other locations) was associated with more pain interference (r = 0.29), whereas pain intensity in the shoulders was associated with less psychological function (r = -0.18), and pain intensity in the bottom or hips was associated with more disability (r = 0.29). CONCLUSION: The findings support the need to take into account pain extent in the assessment and treatment of youths with physical disabilities and chronic pain, call our attention about the need to identify potential risk factors of pain extent, and develop and evaluate the benefits of treatments that could reduce pain extent and target pain at specific sites.

Pain Beliefs and Quality of Life in Young People With Disabilities and Bothersome Pain.

OBJECTIVES: Pain beliefs have been hypothesized to play an important role in pediatric pain. However, research examining the associations between pain-related beliefs and measures of function in youths with disabilities is limited. METHODS: In total, 84 youths (mean age, 14.26 y; SD, 3.27) with physical disabilities who indicated they also had bothersome pain were interviewed and asked to rate their average pain intensity in the past week and to complete measures of pain-related beliefs and health-related quality of life. RESULTS: A number of pain beliefs were associated with different physical and psychosocial function domains, although different beliefs appeared to play different roles, depending on the function domain examined. Across all of the health-related quality-of-life domains studied, a belief that pain is influenced by one's emotions was associated with lower levels of function. No differences were found in pain beliefs related to age. In addition, a small difference in pain beliefs was found for sex; specifically, girls were more likely than boys to endorse the belief that pain is influenced by emotions. DISCUSSION: The findings provide new information regarding the role that pain beliefs have in predicting function and have important clinical implications regarding how youth with physical disabilities and pain might be most effectively treated.

Defining mild, moderate, and severe pain in young people with physical disabilities.

PURPOSE: The purpose of this study is to identify the cutoffs that are most suitable for classifying average and worst pain intensity as being mild, moderate, or severe in young people with physical disabilities. METHOD: Survey study using a convenience sample of 113 young people (mean age = 14.19; SD = 2.9; age range: 8-20) with physical disabilities (namely, spinal cord injury, cerebral palsy, spina bifida, limb deficiency (acquired or congenital), or neuromuscular disease). RESULTS: The findings support a non-linear association between pain intensity and pain interference. In addition, the optimal cutoffs for classifying average and worst pain as mild, moderate, or severe differed. For average pain, the best cutoffs were the following: 0-3 for mild, 4-6 for moderate, and 7-10 for severe pain, whereas the optimal classification for worst pain was 0-4 for mild, 5-6 for moderate, and 7-10 for severe pain. CONCLUSIONS: The findings provide important information that may be used to help make decisions regarding pain treatment in young people with disabilities and also highlight the need to use different cutoffs for classifying pain intensity in young people with disabilities than those that have been suggested for adults with chronic pain. Implications for rehabilitation Most clinical guidelines make treatment recommendations based on classifications of pain intensity as being mild, moderate, and severe that do not have a clear cut association with pain intensity ratings. Cutoffs that are deemed to be the most appropriate for classifying pain intensity as mild, moderate, and severe appear to depend, at least in part, on the pain population that is being studied and pain domain that is being used. This work helps to advance our knowledge regarding the meaning of pain intensity ratings in young people with physical disabilities. Clinicians can use this information to make empirically guided decisions regarding when to intervene in young people with disabilities and chronic pain.

Psychometric properties of the short form of the Children's Depression Inventory (CDI-S) in young people with physical disabilities.

OBJECTIVE: Depression is a significant issue for young people with physical disabilities. Efficient and reliable questionnaires are needed to evaluate and monitor the efficacy of depression treatments in this population. The aim of this study was to evaluate the reliability and validity of the 10-item version of the Children's Depression Inventory (CDI-S) in a sample of young people with physical disabilities. METHODS: A convenience sample of young people with physical disabilities (N=97) was recruited and interviewed. Reliability was evaluated using the Cronbach's α and examining the item-total correlations. Validity was evaluated by computing Pearson correlations between scores on the CDI-S and measures of pain and psychological functioning (anxiety and depression). RESULTS: The CDS-I items loaded on a single factor. The internal consistency of the scale was good (Cronbach's α=0.84) and the CDI-S showed moderate significant correlations with pain intensity (r=0.29), pain interference (r=0.46) and psychological functioning (r=-0.57). Two of the items, however, did not perform well (i.e., item-total correlations <0.3, and Cronbach's α improved when they were deleted). CONCLUSION: The findings support the reliability and validity of the CDI-S scores for use in young people with physical disabilities. The measure's psychometric properties should be studied in larger samples. In addition, there is a new brief version of the CDI (CDI-S 2) that needs to be evaluated in order to determine which of the two scales is better for assessing depression in young people with physical disabilities.

Health Professionals' Practices and Attitudes About Miscarriage.

PURPOSE: The purposes of the study were to explore relationships between attitudes, beliefs, and practices of healthcare professionals caring for women and families experiencing miscarriage and to identify gaps and barriers in follow-up services and supports for these women and families. STUDY DESIGN AND METHODS: A survey about beliefs, attitudes, and practices regarding women and families experiencing miscarriage and barriers to care was conducted electronically and through distribution in three emergency departments (EDs). There were 174 participants; physicians (n = 50), RNs (n = 63), midwives (n = 38), nurse practitioners (n = 9), and others (n = 4). RESULTS: Participants believed that miscarriage can have high impact on women and families. They provided information to patients about miscarriage and its present and future implications. The most important predictor for mobilization of support by healthcare professionals was confidence. Nurses in EDs reported the least amount of confidence and knowledge to provide women and families with support. Availability and awareness of specific services by professionals and health system issues were identified as barriers to care. CLINICAL IMPLICATIONS: Education of healthcare professionals, particularly of RNs in EDs, is important to address misconceptions about miscarriage, increase confidence in providing support, and promote effective care. Women and families experiencing miscarriage need privacy and timeliness in care. Interventions such as funded midwifery loss care or a routine telephone follow-up call could improve access to care and help healthcare professionals ensure that families obtain the type and amount of support that they need.

Interprofessional Collaboration: The Experience of Nursing and Medical Students' Interprofessional Education.

In this hermeneutic phenomenological study, we examined the experience of interprofessional collaboration from the perspective of nursing and medical students. Seventeen medical and nursing students from two different universities participated in the study. We used guiding questions in face-to-face, conversational interviews to explore students' experience and expectations of interprofessional collaboration within learning situations. Three themes emerged from the data: the great divide, learning means content, and breaking the ice. The findings suggest that the experience of interprofessional collaboration within learning events is influenced by the natural clustering of shared interests among students. Furthermore, the carry-forward of impressions about physician-nurse relationships prior to the educational programs and during clinical placements dominate the formation of new relationships and acquisition of new knowledge about roles, which might have implications for future practice.

Systematic review of clinical judgment and reasoning in nursing.

A systematic review was conducted to examine the findings on clinical judgment and reasoning in nursing that have emerged since Tanner's review in 2006. Electronic databases were searched to locate primary research studies about clinical judgment and reasoning in nursing. Fifteen studies were extracted and analyzed using the five main conclusions outlined by Tanner. The findings of the systematic review generally support Tanner's original model, although the role of experience in clinical reasoning and judgment is still not well understood or fully established. In recent literature, researchers have furthered their knowledge by using tools for improving these skills in both nursing students and practicing nurses, although no one strategy has been identified as being more effective. This is reflected in the consideration of a sixth conclusion on clinical judgment and reasoning in nursing-education strategies to improve clinical judgment may influence what a nurse brings to the situation.

Relational ethics in everyday practice.

Oncology nurses frequently encounter ethical issues in their everyday practice because of the complex needs of patients, which require the expertise of many health care providers. The involvement of various health care providers, as well as of the patient and family means there is the potential for differing views about what is best for the patient. The focus of this paper is to share a case history describing the ethical issues experienced by nurses and to illustrate how relational ethics can offer guidance for nurses caring for patients with cancer.

Development of items that assess physical function in children who use wheelchairs.

PURPOSE: To assess the content, format, and comprehension of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric physical function related to mobility items for children who use wheelchairs (WCs). METHODS: During a cognitive interview, 14 children, aged 8 to 12 years, who use WCs, verbalized their thoughts when answering PROMIS items. The questionnaire appraisal system was used to code summarized text from the interviews. RESULTS: The children requested items be more specific and include options for reporting adaptive ways of performing and participating. How they would answer the item depended on the situation and specific environmental supports and constraints they may have experienced. CONCLUSIONS: As rehabilitation professionals develop and use self-reported outcome measures, they should explore what is important to children who use WCs regarding their views on physical functioning, the influences of the environment, and variability in the use of devices to assist with functional mobility.