Chronic Illness Management in Culturally and Linguistically Diverse Patients: Exploring the Needs, Access, and Understanding of Information.

In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients' information needs and provide strategies that go beyond translation.

Pain experiences of adults with osteogenesis imperfecta: An integrative review.

Background: Pain is a common symptom of osteogenesis imperfecta (OI) among children and adolescents. However, little is currently known of the pain experiences of adults with OI. Aims: The aims of this study were to critically appraise the studies assessing OI pain, to synthesize the pain experiences of adults with OI, and to compare the adult OI pain experiences to childhood. Methods: An integrative review was conducted. Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in adults with OI were screened, reviewed, and appraised. Descriptive statistics were used to calculate quality scores, summarize sample characteristics, and synthesize findings. Extracted pain data were analyzed using constant comparison and consolidated into meaningful themes. Results: From the 832 titles identified, 14 studies including seven case reports met the inclusion criteria. Study appraisal scores ranged from low to moderate using the Quality Assessment Tool and the Case Report Checklist. The majority of studies assessed pain as a secondary outcome (71.4%) using well-established tools (64.2%). Adults with OI experience pain of mild to moderate intensity, which may interfere with completion of daily activities. Two themes emerged from analysis of the data: mild chronic pain persists despite surgical, pharmacological, or nonpharmacological interventions and past fractures and structural deformities may trigger onset of chronic pain in adulthood. Conclusion: Limited attention has been given to exploring the pain experience of adults diagnosed with OI. Pain is a long-term symptom of OI requiring further in-depth investigation to better understand and manage pain in adults with OI.

Contexte: La douleur est un symptôme commun de l'ostéogenèse imparfaite (OI) chez les enfants et les adolescents. Toutefois, on sait actuellement peu de choses au sujet de la douleur ressentie par les adultes atteints d'OI.But: Effectuer une appréciation critique des études évaluant la douleur occasionnée par l'OI, faire la synthèse de l'information sur la douleur ressentie par les adultes atteints d'OI et comparer la douleur ressentie à l'âge adulte à celle ressentie pendant l'enfance.Méthodes: Un examen par intégration a été mené. Des recherches ont été effectuées dans cinq bases de données bibliographiques électroniques. Les études quantitatives, qualitatives ou mixtes publiées qui évaluaient la douleur chez les adultes atteints d'OI ont été sélectionnées, examinées et évaluées. Des statistiques descriptives ont été utilisées pour calculer leur score de qualité, résumer les caractéristiques de leur échantillon et synthétiser leurs conclusions. Les données sur la douleur qui avaient été extraites ont été analysées à l'aide de la méthode de la comparaison constante et regroupées en thèmes significatifs.Résultats: Parmi les 832 titres recensés, 14 études comprenant sept rapports de cas répondaient aux critères d'inclusion. Au moment de les évaluer, les études ont obtenu un score de qualité allant de faible à modéré en utilisant l'Outil d'évaluation de la qualité et la Liste de vérification pour les études de cas. La majorité des études évaluaient la douleur en tant que résultat secondaire (71,4 %) à l'aide d'outils bien établis (64,2 %). Les adultes attents d'OI ressentent une douleur d'une intensité allant de légère à modérée, qui peut perturber leurs activités quotidiennes. Deux thèmes ont émergé de l'analyse des données : « La douleur chronique légère persiste malgré les inerventions chirurgicales, pharmacologiques ou non phramacologiques ¼ et « les fractures passées et les malformations structurelles peuvent déclencher la douleur chronique à l'âge adulte ¼.Conclusion: L'étude de la douleur ressentie par les adultes ayant reçu un diagnostic d'OI n'a reçu qu'une attention limitée. La douleur est un symptôme d'OI à long terme qui nécessite une investigation plus approfondie afin de mieux la comprendre et d'en assurer une meilleure prise en charge chez les adultes atteints d'OI.

Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review.

OBJECTIVE: Pain is a commonly experienced symptom for children and adolescents diagnosed with osteogenesis imperfecta (OI). The purpose of this integrative review was to describe the pain experience of children and adolescents with OI as well as critically appraise the content and methods of studies assessing OI pain. METHODS: Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in children and adolescents with OI were included and appraised. Constant comparison of the extracted data was used to synthesize themes. RESULTS: A total of 783 titles were identified, and 19 studies that met the inclusion criteria were included in this review. Study appraisal scores ranged from 25.0% to 83.3% using the Quality Assessment Tool. The majority of studies included assessed pain as a secondary outcome (63%) and less than half used moderately established or well-established tools (42%). Two themes were uncovered: "Pain is Present and Problematic" and "Issues with Pain Assessment." Key findings under each theme include: (1) the negative impacts of pain and the substandard use of pain management strategies; and (2) the lack of multidimensional and consistent pain assessments, as well as difficulties in assessing pain in younger children. DISCUSSION: Research on OI has focused very little on pain experience in children and adolescents, and there is no standard method of assessing pain. To better describe the pain experience of these patients, future research should focus on better characterizing OI pain with the use of age-appropriate valid, reliable, and multidimensional pain assessment tools.