Patient, Family, Caregiver, and Community Engagement in Research: A Sensibility Evaluation of a Novel Infographic and Planning Guide.

Background: Engaging patients, families, caregivers, and the community (PFCCs) throughout the research cycle ensures that research is meaningful for the target population. Although tools have been developed to promote PFCC engagement, many are lengthy, complex, and lack recommended behaviours. This study evaluated the sensibility of an infographic and accompanying planning guide for facilitating engagement of PFCCs in research. Methods: Thirteen rehabilitation researchers reviewed the PFCC engagement tool and planning guide, participated in a semi-structured interview, and completed a 10-item sensibility questionnaire. Interviews were transcribed, imported into NVivo, and analyzed using direct content analysis. Median scores and proportions of responses for each of the 10 items in the questionnaire were calculated. Results: Median scores for all questionnaire items were ≥ 4 on a 7-point Likert Scale. Participants reported the tool was easy to navigate, contained relevant items to promote PFCC engagement, and followed a logical sequence. Suggested modifications of the tool related to formatting, design, and changing the title. Conclusions: The tool was deemed sensible for overt format, purpose and framework, face and content validity, and ease of usage and provides guidance to engage PFCCs across the research cycle. Further studies are recommended to assess the effectiveness of the tool to engage PFCCs in research.

Historique: la mobilisation des patients, des familles, des proches et de la communauté (PFPC) tout au long du cycle de la recherche permet de garantir que celle-ci soit significative pour la population ciblée. Même si des outils ont été mis au point pour promouvoir la mobilité des PFPC, bon nombre sont longs, complexes et dénués d'indications sur les comportements recommandés. La présente étude visait à évaluer la sensibilité d'une infographie et du guide de planification qui l'accompagne pour favoriser la mobilisation des PFPC en recherche. Méthodologie: au total, 13 chercheurs en réadaptation ont examiné l'outil de mobilisation des PFPC et le guide de planification, ont participé à une entrevue semi-structurée et ont rempli un questionnaire de sensibilité en dix points. Les entrevues ont été transcrites, importées dans NVivo et évaluées au moyen d'une analyse directe de contenu. Les scores médians et les proportions des réponses ont été calculés pour chacun des dix points du questionnaire. Résultats: les scores médians à tous les points du questionnaire étaient d'au moins 4 sur une échelle de Likert en sept points. Les participants ont indiqué que l'outil était facile à parcourir, contenait des points appropriés pour favoriser la mobilisation des PFPC et respectait une séquence logique. Les modifications proposées portaient sur le formatage, le graphisme et le changement de titre. Conclusions: l'outil était considéré comme sensible pour son caractère explicite, son objectif et sa structure, sa validité apparente et de contenu et sa facilité d'utilisation. De plus, il contenait des conseils pour mobiliser les PFPC tout au long du cycle de recherche. II est recommandé de réaliser d'autres études pour évaluer l'efficacité de l'outil à mobiliser les PFPC en recherche.

Facilitators and barriers to pressure injury prevention, management and education: Perspectives from healthcare professionals-A qualitative study.

This study aims to (1) characterize healthcare professionals' (HCPs') experiences related to the prevention and management of pressure injuries (PIs) and (2) explore the educational needs of individuals with a past or current history of PIs and their caregivers from the perspective of HCPs. This is a qualitative descriptive study. HCPs (n = 18) were interviewed using a semi-structured interview guide. Interviews were audio-recorded, transcribed verbatim and coded using NVivo. Three overarching themes encompassing various dimensions were identified: (1) Facilitators related to PI prevention and management, (2) Challenges related to PI prevention and management and (3) Recommendations for improving patient and caregiver PI education. HCPs identified a greater number of challenges than facilitators related to PI care. This study emphasizes the importance of a patient-centred and interprofessional approach to patient education for PI prevention and management. Meaningful interventions focused on the patient may improve health literacy and empower patients and caregivers in PI care. Investing in preventive measures and raising awareness are crucial to reducing PI incidence. The findings have implications for HCPs and researchers seeking to enhance patient care and promote effective PI prevention strategies.

Measuring Repositioning in Home Care for Pressure Injury Prevention and Management.

Despite the widespread agreement on the need for the regular repositioning of at-risk individuals for pressure injury prevention and management, adherence to repositioning schedules remains poor in the clinical environment. The situation in the home environment is likely even worse. Our team has developed a non-contact system that can determine an individual's position in bed (left-side lying, supine, or right-side lying) using data from a set of inexpensive load cells placed under the bed. This system was able to detect whether healthy participants were left-side lying, supine, or right-side lying with 94.2% accuracy in the lab environment. The objective of the present work was to deploy and test our system in the home environment for use with individuals who were sleeping in their own beds. Our system was able to detect the position of our nine participants with an F1 score of 0.982. Future work will include improving generalizability by training our classifier on more participants as well as using this system to evaluate adherence to two-hour repositioning schedules for pressure injury prevention or management. We plan to deploy this technology as part of a prompting system to alert a caregiver when a patient requires repositioning.

The use of a mobile educational tool on pressure injury education for individuals living with spinal cord injury/disease: a qualitative research study.

BACKGROUND: As many as 30-60% of individuals living with spinal cord injury/disease (SCI/D) experience at least one pressure injury (PI) in their lifetime. Best practice guidelines in SCI/D rehabilitation emphasize the importance of providing education regarding PI prevention and management for individuals living with SCI/D. Mobile educational applications can be used for PI education however there is limited research on the user-experiences of mobile educational applications about PIs for individuals living with SCI/D. OBJECTIVES: The purpose of this study was to explore the experiences of individuals living with SCI/D on the use of Pressure Ulcer Target (PUT), a mobile educational app for PI prevention and management. METHODS/OVERVIEW: Nine participants living with SCI/D used PUT over two weeks. Individual semi-structured interviews were conducted to explore the participants' perceptions regarding the utility, aesthetics and ease of use of PUT and suggested modifications. A conventional content analysis was used to identify themes and categories from the data. RESULTS: User-experiences with PUT fell into four themes: (1) Strengths and weakness; (2) Target population; (3) Key concepts and messages; and (4) Recommendations for improvement. CONCLUSIONS: PUT serves as a review of previously acquired PI knowledge and should be introduced early in rehabilitation to motivate users to prevent PIs. Future studies exploring healthcare professionals' perspectives of PUT are warranted.Implications for rehabilitationPUT aids individuals living with SCI/D in the community to review PI prevention and management strategies that they learned as inpatients.The use of pictures to deliver patient education regarding PI prevention and management through a mHealth app is recommended.PUT should be introduced early in rehabilitation to motivate users to prevent PIs.

Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorder.

Purpose: How autism spectrum disorder (ASD) is understood (i.e., as a medical problem or natural human variation) has profound implications for how healthcare services are designed and delivered. As the recipients of these services, children and families are highly invested in these debates, yet little research has sought to investigate their views. The purpose of this study was to explore parents' conceptualizations of ASD in relation to disability, and how they align with, or diverge from, conceptualizations they encounter within healthcare.Materials and methods: Nine semi-structured qualitative interviews were conducted with parents of children with ASD and thematically analyzed.Results: The accounts suggested that participants integrated multiple and sometimes contradictory conceptualizations of disability that reflected both "medical" and "social" models and sources of disablement. While the participants often advocated for acceptance and inclusion of their child, the label of "neurodiversity" was commonly rejected due to the concern for potential loss of funding for services.Conclusions: Study findings highlight the relationship between how parents conceptualize ASD and their experiences accessing supportive services within current delivery structures. Implications for ASD service providers emphasize accommodating parents' unique and evolving values and priorities for healthcare and their relation to current service systems.Implications for RehabilitationParents conceptualizations of ASD both inform and are influenced by their experiences of accessing supportive services.This study highlights that parents' perspectives are fluid, context-dependent, and do not exclusively represent a single model or perspective of disability.To meet family needs, service providers including healthcare professionals must recognize parents' unique understandings of their child's ASD and appreciate how healthcare shapes these perceptions.

Toward mitigating pressure injuries: Detecting patient orientation from vertical bed reaction forces.

INTRODUCTION: Prolonged bed rest without repositioning can lead to pressure injuries. However, it can be challenging for caregivers and patients to adhere to repositioning schedules. A device that alerts caregivers when a patient has remained in the same orientation for too long may reduce the incidence and/or severity of pressure injuries. This paper proposes a method to detect a person's orientation in bed using data from load cells placed under the legs of a hospital grade bed. METHODS: Twenty able-bodied individuals were positioned into one of three orientations (supine, left side-lying, or right side-lying) either with no support, a pillow, or a wedge, and the head of the bed either raised or lowered. Breathing pattern characteristics extracted from force data were used to train two machine learning classification systems (Logistic Regression and Feed Forward Neural Network) and then evaluate for their ability to identify each participant's orientation using a leave-one-participant-out cross-validation. RESULTS: The Feed Forward Neural Network yielded the highest orientation prediction accuracy at 94.2%. CONCLUSIONS: The high accuracy of this non-invasive system's ability to a participant's position in bed shows potential for this algorithm to be useful in developing a pressure injury prevention tool.

The relationship between pressure offloading and ischial tissue health in individuals with spinal cord injury: An exploratory study.

Objectives: To compare thickness and texture measures of tissue overlying the ischial region in able-bodied (AB) individuals vs. individuals with spinal cord injury (SCI) and to determine if there is a relationship between pressure offloading of the ischial tuberosities (IT) and tissue health in individuals with SCI. Design: Exploratory cross-sectional study. Setting: University setting and rehabilitation hospital. Outcome Measures: Thickness and texture measurements from ultrasound images of tissues overlying the IT were obtained from AB individuals (n = 10) and individuals with complete or incomplete traumatic and non-traumatic SCI American Spinal Injury Association Impairment Scale (AIS) classification A-D (n = 15). Pressure offloading was measured in individuals with SCI and correlated with tissue health measurements. Results: The area overlying the IT occupied by the muscle was significantly greater in the SCI when compared with AB cohort. The area occupied by the muscle in individuals with SCI appeared to lose the striated appearance and was more echogenic than nearby skin and subcutaneous tissue (ST). There was no correlation between offloading times and thickness, echogenicity and contrast measurements of skin, ST and muscle in individuals with SCI. Conclusion: Changes in soft tissues overlying the ischial tuberosity occur following SCI corresponding to the loss of striated appearance of muscle and increased thickness of the area occupied by the muscle. Further studies using a larger sample size are recommended to establish if thickness and tissue texture differ between individuals with SCI who sustain pressure injuries vs. those who do not.

Ultrasound imaging of tissue overlying the ischial tuberosity: Does patient position matter?

BACKGROUND: Deep Tissue Pressure Injury (DTI) occurs in the tissues underlying the skin that may not have visible signs of skin breakdown and may be detected by ultrasound. The optimal position for ischial region ultrasound image acquisition to facilitate assessment of the tissue proximal to the ischias not been determined. OBJECTIVE: To evaluate the mean difference in geometric and grey scale measures of tissues overlying the ischial tuberosity (IT) acquired from ultrasound images in supine and lateral recumbent simulated sitting positions from adults with spinal cord impairment (SCI). METHODS: Nine individuals (3 acute and 6 chronic) with SCI or disease with neurological level of injury C4-T12 and AIS A-D and who used a wheelchair for mobility were recruited and underwent ultrasound acquisition in the supine and lateral recumbent positions. One participant was imaged twice on a separate day. Three images from the left (n = 8) and right (n = 2) IT were scanned using a 6 - 18 MHz linear ultrasound probe (Acuson S2000) with participants' hips and knees flexed to 90° in both the supine and lateral recumbent positions using a single rater protocol. MATLAB Image Processing Toolbox with a customized script was used to obtain mean and maximal thickness, echogenicity and contrast of skin, subcutaneous tissue and muscle. Wilcoxon Signed Rank Test and Bland Altman analysis was used to determine if there were differences between the two image acquisition positions and to construct limits of agreement. RESULTS: Thickness and contrast measures were similar in the supine and lateral recumbent positions (p > 0.05). Muscle echogenicity was lower in the supine position (p = 0.04). CONCLUSION: There is agreement in geometric and grey scale measures of tissues over the IT between the supine and lateral recumbent positions with the exception of muscle echogenicity, which was lower in the supine position. Since DTI is thought to originate in the muscle and echogenicity plays in a role in abnormal tissue imaging diagnosis, further studies are recommended to determine the impact of body position on muscle echogenicity prior to being used in prospective studies.

Quantitative ultrasound imaging over the ischial tuberosity: An exploratory study to inform tissue health.

BACKGROUND: Characterization of ischial tissue health using a standardized diagnostic ultrasound protocol capturing thickness and gray scale analysis has not been established. OBJECTIVES: This study evaluates inter-participant and inter-trial reliability of thickness and gray scale analysis of ultrasound images of tissues overlying the ischial tuberosity. It provides recommendations for the number of images required to minimize the standard error of measurement (SEM) and determines the number of images required for thickness, gray scale and contrast values that exceed an a-priori minimal detectable change (MDC) for repeated tissue assessment. METHODS: Brightness mode ultrasound images using a 12 MHz linear probe were collected on the dominant limb in the side lying position for ten healthy participants and partitioned into three regions of interest: skin, subcutaneous tissue and muscle. Thickness and gray scale measures of skin, muscle and subcutaneous tissue were calculated using a customized MATLAB program. Contrast of each region of interest was calculated using the Gray Scale Level Co-Occurrence Matrix. Generalizability theory was used to quantify indices of dependability and corresponding SEMs and MDCs with 90% Confidence Intervals. RESULTS: Participants accounted for most of the total variance (75.56% to 94.78%). Coefficient of dependability (ϕ) for thickness, grey scale and contrast measures was greater than 0.80 when more than two images were averaged. In order to detect a MDC of 21% in thickness and echogenicity measures, at least three images are required, while at least 5 images are required for a MDC of 25% for contrast measures. CONCLUSIONS: Obtaining reliable thickness, echogenicity and contrast measures of tissue overlying the ischial tuberosity can be achieved from two ultrasound images by a single therapist on an individual participant however three and five images are required to use a MDC of 21% for thickness measures and MDC of 25% for contrast measures respectively.

Skin color and tissue thickness effects on transmittance, reflectance, and skin temperature when using 635 and 808 nm lasers in low intensity therapeutics.

OBJECTIVE: To examine the role of skin color and tissue thickness on transmittance, reflectance, and skin heating using red and infrared laser light. METHODS: Forty volunteers were measured for skin color and skin-fold thickness at a standardized site near the elbow. Transmittance, reflectance and skin temperature were recorded for energy doses of 2, 6, 9, and 12 Joules using 635 nm (36 mW) and 808 nm (40 mW) wavelength laser diodes with irradiances within American National Standards Institute safety guidelines (4.88 mm diameter, 0.192 W/cm2 and 4.88 mm diameter, 0.214 W/cm2 , respectively). RESULTS: The key factors affecting reflectance to an important degree were skin color and wavelength. However, the skin color effects were different for the two wavelengths: reflectance decreased for darker skin with a greater decrease for red light than near infrared light. Transmittance was greater using 808 nm compared with 635 nm. However, the effect was partly lost when the skin was dark rather than light, and was increasingly lost as tissue thickness increased. Dose had an increasing effect on temperature (0.7-1.6°C across the 6, 9, and 12 J doses); any effects of wavelength, skin color, and tissue thickness were insignificant compared to dose effects. Subjects themselves were not aware of the increased skin temperature. Transmittance and reflectance changes as a function of energy were very small and likely of no clinical significance. Absorption did not change with higher energy doses and increasing temperature. CONCLUSION: Skin color and skin thickness affect transmittance and reflectance of laser light and must be accounted for when selecting energy dose to ensure therapeutic effectiveness at the target tissue. Skin heating appears not to be a concern when using 635 and 808 nm lasers at energy doses of up to 12 J and irradiance within American National Standards Institute standards. Photobiomodulation therapy should never exceed the American National Standards Institute recommendation for the maximum permissible exposure to the skin. Lasers Surg. Med. 50:291-301, 2018. © 2017 Wiley Periodicals, Inc.

Trunk Function and Ischial Pressure Offloading in Individuals with Spinal Cord Injury.

OBJECTIVE: To determine if there is a relationship between trunk function and offloading of the ischial tuberosities in individuals with Spinal Cord Injury (SCI). DESIGN: Prospective cross-sectional evaluation. SETTING: Sub-acute rehabilitation hospital. PARTICIPANTS: Fifteen non-ambulatory participants with complete or incomplete traumatic and non-traumatic SCI, American Spinal Injury Association Impairment Scale (AIS), Classification A-D. OUTCOME MEASURES: Isometric trunk strength using a hand held dynamometer, the ability to reach using the multidirectional reach test and offloading times of the ischial tuberosities using a customized pressure mat. RESULTS: Participants who were able to engage in the multidirectional reach test were defined as "Reachers", whereas individuals who were unable to engage in the multidirectional reach test were defined as "Non-Reachers". Trunk strength was significantly higher in Reachers compared with Non-Reachers (P < 0.05). Offloading times over the left and right ischial tuberosities were lower in Non-Reachers when compared with Reachers, however the results were statistically significant only for offloading over the right ischial tuberosity (P < 0.05). There was no correlation between trunk strength and pressure offloading times for both groups. CONCLUSIONS: Regardless of an individual's ability to engage in a reaching task, participants with spinal cord injury spent more time offloading the left ischial tuberosity compared with the right ischial tuberosity. The study highlights the need to identify factors that may contribute to offloading behavior in individuals with spinal cord injury who lack sufficient trunk strength.

Effects of Seated Postural Stability and Trunk and Upper Extremity Strength on Performance during Manual Wheelchair Propulsion Tests in Individuals with Spinal Cord Injury: An Exploratory Study.

Objectives. To quantify the association between performance-based manual wheelchair propulsion tests (20 m propulsion test, slalom test, and 6 min propulsion test), trunk and upper extremity (U/E) strength, and seated reaching capability and to establish which ones of these variables best predict performance at these tests. Methods. 15 individuals with a spinal cord injury (SCI) performed the three wheelchair propulsion tests prior to discharge from inpatient SCI rehabilitation. Trunk and U/E strength and seated reaching capability with unilateral hand support were also measured. Bivariate correlation and multiple linear regression analyses allowed determining the best determinants and predictors, respectively. Results. The performance at the three tests was moderately or strongly correlated with anterior and lateral flexion trunk strength, anterior seated reaching distance, and the shoulder, elbow, and handgrip strength measures. Shoulder adductor strength-weakest side explained 53% of the variance on the 20-meter propulsion test-maximum velocity. Shoulder adductor strength-strongest side and forward seated reaching distance explained 71% of the variance on the slalom test. Handgrip strength explained 52% of the variance on the 6-minute propulsion test. Conclusion. Performance at the manual wheelchair propulsion tests is explained by a combination of factors that should be considered in rehabilitation.

A study of the utility and equivalency of 2 methods of wound measurement: digitized tracing versus digital photography.

OBJECTIVE: To examine agreement between digitized tracing and digital photography methods in measuring wound area and healing rate, and to compare and contrast the 2 methods on feasibility and utility in patient care and research settings. SETTING: Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada. PARTICIPANTS: A total of 20 subjects aged 18 years or older with a spinal cord injury and pressure ulcers that were Stage II or higher, and who had received in- or outpatient wound care at the hospital for at least 3 consecutive weeks. METHODS: Wound area was measured at weekly intervals. One assessor calculated wound area from a digitized tracing. A second assessor calculated wound area using a wound photograph. Both assessors used Image-J software. The 2 methods were compared for differences in weekly wound area and weekly healing rate. RESULTS: Methods were different for wound area (P < .0001), whereas there was no difference between methods in weekly healing rate (P = .9429). CONCLUSIONS: The 2 methods are in agreement on the important parameter of healing rate. Both methods are feasible in clinical settings. Wound photography may be more useful than digitized tracings because it simultaneously captures wound appearance.

Trunk strength and function using the multidirectional reach distance in individuals with non-traumatic spinal cord injury.

CONTEXT: Trunk control is essential to engage in activities of daily living. Measuring trunk strength and function in persons with spinal cord injury (SCI) is difficult. Trunk function has not been studied in non-traumatic SCI (NTSCI). OBJECTIVES: To characterize changes in trunk strength and seated functional reach in individuals with NTSCI during inpatient rehabilitation. To determine if trunk strength and seated reach differ between walkers and wheelchair users. To explore relationships between trunk and hip strength and seated functional reach. DESIGN: Observational study. SETTING: Two SCI rehabilitation facilities. PARTICIPANTS: 32 subacute inpatients (mean age 48.0 ± 15.4 years). OUTCOME MEASURES: Isometric strength of trunk and hip and function (Multidirectional Reach Test: MDRT) were assessed at admission and within 2 weeks of discharge. Analysis of variance was conducted for admission measures (MDRT, hip and trunk strength) between walkers and wheelchair users. Changes in MDRT, hip and trunk strength were evaluated using parametric and non-parametric statistics. The level of association between changes in values of MRDT and strength was also examined. RESULTS: Significant differences between walkers and wheelchair users were found for strength measures (P < 0.05) but not for MDRT. Left- and right-sided reaches increased in wheelchair users only (P < 0.05). Associations between changes in hip strength, trunk strength, and reach distance were found (R = 0.67-0.73). CONCLUSION: In clinical settings, it is feasible and relevant to assess trunk, hip strength, and MRDT. Future studies require strategies to increase the number of participants assessed, in order to inform clinicians about relevant rehabilitation interventions.