Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review.

BACKGROUND: Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. METHODS: We followed PRISMA guidelines and Arksey and O'Malley's approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. RESULTS: We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. CONCLUSIONS: Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.

Needs assessment of parents for a patient decision aid in pediatric interval appendectomy via the qualitative interview method.

Objectives: Appendicitis is one of the most commonly encountered pediatric surgical diagnoses, with non-operative management of perforated appendicitis leading to two treatment options: an interval appendectomy (IA) or expectant management. The primary objective of this study was to assess parents' need for a patient decision aid (PDA) among parents considering IA or expectant management. A secondary objective was to determine parent preferences for the format and distribution plan of a drafted patient decision aid. Methods: Coulter's systematic development process for PDA was used to guide the assessment interviews for parents. Participants included caregivers of a patient who experienced perforated appendicitis, and admission between 2019 and 2020. Semi-structured individual interviews were conducted to collect information about decision-making needs of parents of children who experienced perforated appendicitis. Results: A total of 12 different parents participated in the interviews. Results indicate decisional conflict associated with the lack of evidence for optimal treatment, supporting the need for the development of a patient decision aid to assist in clarifying information and parent values with practitioners. Parents clearly identified a need for evidence to support decision-making in various formats (eg, pamphlet or electronic). Timing of when to deliver the PDA varied (ie, during hospital admission, at discharge, or at follow-up appointment). Conclusion: Results indicated various factors contributing to parental decisional conflict, including the lack of evidence showing the optimal treatment, the need for more information, and guidance from practitioners. Overall, findings indicate a strong need for a patient decision aid.

Postoperative complications of colectomy and J-pouch with ileostomy versus without ileostomy in children with inflammatory bowel diseases: a systematic review and meta-analysis.

Background: The efficacy of performing a restorative proctocolectomy and J-pouch ileoanal anastomosis without diverting ileostomy in children with inflammatory bowel disease has been a longstanding debate. A systematic review and meta-analysis is presented comparing the occurrence of postoperative complications in children who underwent either the pouch-anal anastomosis (IPAA) with ileostomy (diverted) versus the undiverted procedure. Methods: Records were sourced from CINAHL, CENTRAL, EMBASE and MEDLINE databases. Studies followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and compared postoperative complications in pediatric patients diagnosed with inflammatory diseases aged less than 18 years who underwent J-pouch with ileostomy versus without ileostomy. The primary outcome was the occurrence of postoperative leaks, and the secondary outcomes were presence of postoperative small bowel obstruction (SBO), pouchitis, stricture and fistula complications. A random-effects meta-analysis was used. Results: Twenty-three observational studies in the systematic review were included with 658 patients (83% diverted, 17% undiverted). Pooled estimates showed no difference in occurrence of leaks in children who underwent J-pouch/IPAA with ileostomy versus without (odds ratio (OR) 0.54, 95% confidence interval (CI) 0.17 to 1.64, I2=16%). There was no difference in the occurrence of SBO, pouchitis or strictures in children who underwent J-pouch/IPAA with ileostomy versus without (SBO: OR 2.27, 95% CI 0.52 to 9.92, I2=0%, pouchitis: OR 1.76, 95% CI 0.95 to 3.24, I2=0%, strictures: OR 2.72, 95% CI 0.44 to 16.69, I2=66%). Conclusion: The meta-analysis did not find differences in the occurrence of complications in pediatric patients who underwent the IPAA with ileostomy procedure versus without ileostomy.

Addressing barriers to evidence-based medicine in pediatric surgery: an introduction to the Canadian Association of Paediatric Surgeons Evidence-Based Resource.

Background: Pediatric surgical practice lags behind medicine in presence and use of evidence, primarily due to time constraints of using existing tools that are not specific to pediatric surgery, lack of sufficient patient data and unstructured pediatric surgery training methods. Method: We developed, disseminated and tested the effectiveness of an evidence-based resource for pediatric surgeons and researchers that provides brief, informative summaries of quality-assessed systematic reviews and meta-analyses on conflicting pediatric surgery topics. Results: Responses of 91 actively practicing surgeons who used the resource were analysed. The majority of participants found the resource useful (75%), improved their patient care (66.6%), and more than half (54.2%) found it useful in identifying research gaps. Almost all participants reported that the resource could be used as a teaching tool (93%). Conclusion: Lack of awareness of the resource is the primary barrier to its routine use, leading to potential calls for more active dissemination worldwide. Users of the Canadian Association of Paediatric Surgeons Evidence-Based Resource find that the summaries are useful, identify research gaps, help mitigate multiple barriers to evidence-based medicine, and may improve patient care.

Quality of life outcomes in children after surgery for Hirschsprung disease and anorectal malformations: a systematic review and meta-analysis.

Background: No systematic review and meta-analysis to date has examined multiple child and parent-reported social and physical quality of life (QoL) in pediatric populations affected by Hirschsprung's disease (HD) and anorectal malformations (ARM). The objective of this systematic review is to quantitatively summarize the parent-reported and child-reported psychosocial and physical functioning scores of such children. Methods: Records were sourced from the CENTRAL, EMBASE, and MEDLINE databases. Studies that reported child and parent reported QoL in children with HD and ARM, regardless of surgery intervention, versus children without HD and ARM, were included. The primary outcome was the psychosocial functioning scores, and the secondary outcomes were the presence of postoperative constipation, postoperative obstruction symptoms, fecal incontinence, and enterocolitis. A random effects meta-analysis was used. Results: Twenty-three studies were included in the systematic review, with 11 studies included in the meta-analysis. Totally, 1678 total pediatric patients with HD and ARM underwent surgery vs 392 healthy controls. Pooled parent-reported standardized mean (SM) scores showed better social functioning after surgery (SM 91.79, 95% CI (80.3 to 103.3), I2=0). The pooled standardized mean difference (SMD) showed evidence for parent-reported incontinence but not for constipation in children with HD and ARM after surgery that had a lower mean QoL score compared with the normal population (SMD -1.24 (-1.79 to -0.69), I2=76% and SMD -0.45, 95% CI (-1.12 to 0.21), I2=75%). The pooled prevalence of child-reported constipation was 22% (95% CI (16% to 28%), I2=0%). The pooled prevalence of parent-reported postoperative obstruction symptoms was 61% (95% CI (41% to 81%), I2=41%). Conclusion: The results demonstrate better social functioning after surgery, lower QoL scores for incontinence versus controls, and remaining constipation and postoperative obstruction symptoms after surgery in children with HD and ARM.

Development and evaluation of a patient decision aid for pediatric interval appendectomy.

Objective: One option for the treatment of perforated appendicitis in pediatric patients is interval appendectomy (IA). A patient decision aid (PDA) can be useful in the decision-making process regarding IA. The purpose of this study was to evaluate parents' decisional conflict before and after engaging with a developed PDA. Methods: Participants included (a) parents who are considering IA surgery for their child, (b) have not yet had their follow-up appointment postdischarge, and (c) were fluent in either the official languages of English or French. This study used a pretest and post-test design to measure participants' decisional conflict and treatment option choice. Perceptions and acceptability of the PDA were also assessed. Results: A total of 18 participants completed the study (16 mothers). Major findings include significant decreases in all Decisional Conflict Scale items from pre-PDA to post-PDA engagement, except for one item. The majority of participants perceived the PDA to be useful, easy to find information regarding risks and provided enough information to help them make a decision regarding their child's treatment. Conclusions: This is the first study to develop and evaluate a PDA among parents who are making a decision regarding IA surgery. The results showed a significant decrease in decisional conflict after using the PDA. The results also showed that the PDA was generally accepted among parents and had positive perceptions regarding length, content, and balance. The use of PDA for this population can help ease feelings of decisional conflict and equip parents with the information to make informed decisions.

Long-term Outcomes of Patients Surgically Treated for Hirschsprung Disease.

BACKGROUND: The only curative treatment for Hirschsprung disease (HD) is surgical repair. However, some patients experience poor postoperative outcomes. We determined long-term outcomes of all HD patients in Ontario, Canada's most populous province. METHODS: We conducted a retrospective cohort study including all children with HD born between April 1, 1991 and March 31, 2014 in Ontario using linked health administrative data. Each HD case was matched to five non-HD controls on sex, date of birth, region of residence and income and followed to March 31, 2016. Chronic diarrhea and constipation were identified using combinations of outpatient physician billing codes in both HD patients and non-HD residents of the province. We determined risk factors associated with diarrhea and constipation, including surgery type and sociodemographic characteristics, using multivariable conditional logistic regression, and reported adjusted odds ratios (aORs). RESULTS: There were 3,265,172 children born in the study period, of whom 673 had HD. Compared to controls, chronic constipation was more common in HD patients (27.5% versus 2.1%; aOR 17.2, 95% CI 12.6 to 23.4), as was chronic diarrhea (29.9% versus 6.9%, aOR 5.22, 95% CI 4.19 to 6.50). In HD patients, older age at surgery was associated with increased risk of chronic constipation (OR 2.71, 95% CI 1.75 to 4.20). Surgery type, sex, rural/urban residence and income were not associated with risk of chronic constipation or diarrhea. CONCLUSION: Chronic constipation and diarrhea were common following surgery for HD. Older age at surgery was associated with subsequent risk of chronic constipation. Surgery type was not associated with increased risk of chronic constipation or diarrhea.

Coaching Caregivers of Children who are Deaf or Hard of Hearing: A Scoping Review.

Caregiver coaching is an expected practice in early intervention. However, little is known about coaching with caregivers of children who are deaf or hard of hearing, receiving services for listening and spoken language (LSL). A systematic review of 7 databases, the gray literature, and consultation with 7 expert LSL practitioners yielded 506 records for full-text review, 22 of which were ultimately included in the review. Our findings are presented as 3 themes: coaching practices, training for coaching, and effectiveness of coaching. Eight models of coaching were identified in the literature, from which we identified commonalities to propose a consolidated model that illustrates the recommendations and process of caregiver coaching found in the LSL literature.

Interventions to improve cancer survivorship among Indigenous Peoples and communities: a systematic review with a narrative synthesis.

PURPOSE: The purpose of this systematic review is to synthesize the evidence on the types of interventions that have been utilized by Indigenous Peoples living with cancer, and report on their relevance to Indigenous communities and how they align with holistic wellness. METHODS: A systematic review with narrative synthesis was conducted. RESULTS: The search yielded 7995 unique records; 27 studies evaluating 20 interventions were included. The majority of studies were conducted in USA, with five in Australia and one in Peru. Study designs were cross-sectional (n=13); qualitative (n=5); mixed methods (n=4); experimental (n=3); and quasi-experimental (n=2). Relevance to participating Indigenous communities was rated moderate to low. Interventions were diverse in aims, ingredients, and outcomes. Aims involved (1) supporting the healthcare journey, (2) increasing knowledge, (3) providing psychosocial support, and (4) promoting dialogue about cancer. The main ingredients of the interventions were community meetings, patient navigation, arts, and printed/online/audio materials. Participants were predominately female. Eighty-nine percent of studies showed positive influences on the outcomes evaluated. No studies addressed all four dimensions of holistic wellness (physical, mental, social, and spiritual) that are central to Indigenous health in many communities. CONCLUSION: Studies we found represented a small number of Indigenous Nations and Peoples and did not meet relevance standards in their reporting of engagement with Indigenous communities. To improve the cancer survivorship journey, we need interventions that are relevant, culturally safe and effective, and honoring the diverse conceptualizations of health and wellness among Indigenous Peoples around the world.

Hearing loss prevalence and hearing health among school-aged children in the Canadian Arctic.

OBJECTIVE: Hearing loss is an important health concern in Canada's Arctic. The objective of this research was to provide information on the prevalence of childhood hearing loss in Nunavut. DESIGN: This cross-sectional study involved comprehensive audiologic assessments of school-aged children in six communities to determine overall and community-specific prevalence of hearing loss. Data were collected about hearing aid use and factors affecting use through a parent questionnaire. STUDY SAMPLE: Assessments were completed for 644 children in kindergarten to grade 6. RESULTS: 124 (19.3%) children had hearing loss of ≥ 30 dB HL at one or more frequencies in at least one ear (93.5% conductive loss). Applying a Canadian prevalence study definition, 148 (23.5%) children had hearing loss. Tympanic membrane perforations were present in 36.8% (n = 28) of children with unilateral and 45.8% (n = 22) with bilateral loss. CONCLUSIONS: The prevalence of hearing loss in Canada's North was almost three times that reported for non-indigenous children. One in five school-aged children was found to have hearing loss that is likely to affect classroom learning and social/emotional development. A hearing health strategy tailored to this population is critically needed.

Predictors of spontaneous resolution of umbilical hernia in children.

Objective: The aims were to describe the management of umbilical hernias, to define postoperative complications, and to identify the characteristics of patients that were more likely to have spontaneous resolution of their hernia. Methods: All patients referred for umbilical hernia at the Children's Hospital of Eastern Ontario from January 1990 to April 2017 were examined via retrospective chart review. Spontaneous resolution of umbilical hernia was examined using binary logistic regression. Results: We included 2621 patients presenting with an umbilical hernia. A total of 1587 (60.5%) patients underwent surgical repair at a median age of 3.6 years (IQR 2.3-5.4). Surgical complications consisted of infection (n=3), bleeding (n=3), hematoma (n=3), and anesthesia-related complications (n=3). For every one-unit increase in defect size, the odds of a spontaneous resolution of the hernia were 5% lower while controlling for prematurity and the presence of comorbidities [adjusted odds ratio (aOR)=0.95; 95% confidence intervel (CI) 0.93 to 0.97]. Premature babies were 80% less likely to experience hernia resolution compared with non-premature babies (aOR=0.20; 95% CI 0.03 to 0.74). Conclusion: The odds of spontaneous resolution were lower for premature babies and were negatively correlated with defect size.

Thoracoscopy vs. thoracotomy for the repair of esophageal atresia and tracheoesophageal fistula: a systematic review and meta-analysis.

Esophageal atresia (EA) and tracheoesophageal fistula (TEF) require emergency surgery in the neonatal period to prevent aspiration and respiratory compromise. Surgery was once exclusively performed via thoracotomy; however, there has been a push to correct this anomaly thoracoscopically. In this study, we compare intra- and post-operative outcomes of both techniques. A systematic review and meta-analyses was performed. A search strategy was developed in consultation with a librarian which was executed in CENTRAL, MEDLINE, and EMBASE from inception until January 2017. Two independent researchers screened eligible articles at title and abstract level. Full texts of potentially relevant articles were then screened again. Relevant data were extracted and analyzed. 48 articles were included. A meta-analysis found no statistically significant difference between thoracoscopy and thoracotomy in our primary outcome of total complication rate (OR 0.98, [0.29, 3.24], p = 0.97). Likewise, there were no statistically significant differences in anastomotic leak rates (OR 1.55, [0.72, 3.34], p = 0.26), formation of esophageal strictures following anastomoses that required one or more dilations (OR 1.92, [0.93, 3.98], p = 0.08), need for fundoplication following EA repair (OR 1.22, [0.39, 3.75], p = 0.73)-with the exception of operative time (MD 30.68, [4.35, 57.01], p = 0.02). Considering results from thoracoscopy alone, overall mortality in patients was low at 3.2% and in most cases was due to an associated anomaly rather than EA repair. Repair of EA/TEF is safe, with no statistically significant differences in morbidity when compared with an open approach.Level of evidence 3a systematic review of case-control studies.

Service Preferences of Parents of Children With Mild Bilateral or Unilateral Hearing Loss: A Conjoint Analysis Study.

OBJECTIVE: Universal newborn hearing screening results in substantially more children with mild bilateral and unilateral hearing loss identified in the early years of life. While intervention services for children with moderate loss and greater are generally well-established, considerable uncertainty and variation surrounds the need for intervention services for children with milder losses. This study was undertaken with parents of young children with permanent mild bilateral and unilateral hearing loss to examine their preferences for characteristics associated with intervention services. DESIGN: Conjoint analysis, a preference-based technique, was employed to study parents' strength of preferences. Using a cross-sectional survey that consisted of eight hypothetical clinic scenarios, we invited parents to make a discrete choice (to select one of two or more different services) between available services with different characteristics. The survey was informed by qualitative interviews conducted for this purpose. The questionnaire was administered to parents receiving intervention services in the province of Ontario, Canada, who were enrolled in a mixed-methods longitudinal study examining outcomes in early-identified children with mild bilateral/unilateral hearing loss. Data were analyzed using a generalized linear model (probit link) to identify attributes of interest for the respondents. Characteristics of the children were entered into the model to control for differences in age of diagnosis, sex, laterality of hearing loss, and hearing aid use. RESULTS: A total of 51 of 62 invited parents completed the questionnaire. All four attributes of care that were included in the survey were found to be statistically significant, that is, parents valued support for amplification, support for speech-language development, emotional support, and communication from professionals. Analysis showed greater preference for enhanced levels relating to support for speech-language development than for support for amplification. Preference for attributes relating to emotional support and communication were also greater than for support for amplification use. CONCLUSIONS: Conjoint analysis was used to quantify parents' preferences for service attributes. Parents' values provide insights into the aspects of a service model that should receive consideration in the development of intervention programs for young children with mild bilateral or unilateral hearing loss and their families. Although parents of young children with mild bilateral or unilateral hearing loss valued several components of care, they indicated a clear preference for speech-language support compared with support for amplification use.

Spirituality in cancer survivorship with First Nations people in Canada.

BACKGROUND: Advancements in cancer survivorship care have shown that holistic approaches, tailored to people's unique survivorship needs, can decrease cancer burden and enhance well-being and quality of life. The purpose of this study was to explore the meanings of spirituality in cancer survivorship for First Nations people, the largest Indigenous population in Canada, and describe how spiritual practices are incorporated into healing. METHODS: This study is part of a larger arts-based project about cancer survivorship with First Nations people. Thirty-one cancer survivors discussed spirituality as part of their cancer survivorship experiences. Data were generated through sharing sessions (n = 8) and individual interviews (n = 31). Qualitative descriptive analysis was conducted. RESULTS: Three themes emerged about the meaning of spirituality in cancer survivorship. Spirituality was expressed as a complex phenomenon that (1) interconnected self with traditional roots and culture, (2) merged the body and mind, and (3) gave meaning, strength, and faith in the cancer journey. First Nations people incorporated spirituality into cancer survivorship by giving thanks, attending places of spiritual connectedness, singing, praying, speaking to the Creator, and engaging the sun and moon. CONCLUSION: First Nations cancer survivors have viewed cancer as an opportunity for emotional and spiritual growth that enabled healing. Understanding the role of spirituality in cancer survivorship is important to develop and deliver culturally safe health services that reduce the burden of cancer and ultimately improve outcomes for First Nations people in Canada.

Barriers and facilitators to cultural competence in rehabilitation services: a scoping review.

BACKGROUND: There is an important need to evaluate whether rehabilitation services effectively address the needs of minority culture populations with North America's increasingly diverse population. The objective of this paper was therefore to review and assess the state of knowledge of barriers and facilitators to cultural competence in rehabilitation services. METHOD: Our scoping review focused on cultural competence in rehabilitation services. Rehabilitation services included in this review were: audiology, speech-language pathology, physiotherapy, and occupational therapy. A search strategy was developed to identify relevant articles published from inception of databases until April 2015. Titles and abstracts were screened by two independent reviewers according to specific eligibility criteria with the use of a liberal-accelerated approach. Full-text articles meeting inclusion criteria were then screened. Key study characteristics were abstracted by the first reviewer, and findings were verified by the second reviewer. RESULTS: After duplicates were removed, 4303 citations were screened. Included articles suggest that studies on cultural competence occur most frequently in occupational therapy (n = 17), followed by speech language pathology (n = 11), physiotherapy (n = 6), and finally audiology (n = 1). Primary barriers in rehabilitation services include language barriers, limited resources, and cultural barriers. Primary facilitators include cultural awareness amongst practitioners, cultural awareness in services, and explanations of health care systems. CONCLUSION: To our knowledge, this review is the first to summarize barriers and facilitators to cultural competence in rehabilitation fields. Insufficient studies were found to draw any conclusions with regards to audiological services. Minimal perspectives based on patient/caregiver experiences in all rehabilitation fields underscore a research gap. Future studies should aim to explore both patient/caregiver and practitioner perspectives as such data can help inform culturally competent practices.

School-aged Children with Mild Bilateral and Unilateral Hearing Loss: Parents' Reflections on Services, Experiences, and Outcomes.

Following the establishment of newborn hearing screening programs, age of identification and length of time before receiving interventions has been reduced for children, including those with milder degrees of hearing loss who were previously not identified until school age. This population of early-identified children requires new support programs for parents. Although literature is emerging on how parents experience the initial years, there is limited information on support needs during early school years. The objectives were to gain insights into parents' experiences with services during the early period of identification until early school years, as well as their perceptions of the consequences of hearing loss on their child's overall development. A qualitative research design informed by Interpretive Description was employed. Individual semi-structured interviews were conducted with 12 parents of children identified with mild hearing loss. Transcripts were analyzed using a constant comparative method. Four themes emerged from the data: early experiences with services and hearing technology, effects of hearing loss on social functioning, effects of hearing loss on language and academics, and experiences in early school years. From parents' perspectives, more support during the early school years is needed to help ensure academic success.

Exploring reasons for late identification of children with early-onset hearing loss.

INTRODUCTION: Several studies have shown that early identification of childhood hearing loss leads to better language outcomes. However, delays in the confirmation of hearing loss persist even in the presence of well-established universal newborn hearing screening programs (UNHS). The objective of this population-based study was to document the proportion of children who experienced delayed confirmation of congenital and early onset hearing loss in a UNHS program in one region of Canada. The study also sought to determine the reasons for delayed confirmation of hearing loss in children. METHODS: Population level data related to age of first assessment, age of identification and clinical characteristics were collected prospectively for all children identified through the UNHS program. We documented the number of children who experienced delay (defined as more than 3 months) from initial audiologic assessment to confirmation of hearing loss. A detailed chart review was subsequently performed to examine the reasons for delay to confirmation. RESULTS: Of 418 children identified from 2003 to 2013, 182 (43.5%) presented with congenital or early onset hearing loss, of whom 30 (16.5%) experienced more than 3 months delay from initial audiologic assessment to confirmation of their hearing disorder. The median age of first assessment and confirmation of hearing loss for these 30 children was 3.7 months (IQR: 2.0, 7.6) and 13.8 months (IQR: 9.7, 26.1) respectively. Close examination of the factors related to delay to confirmation revealed that for the overwhelming majority of children, a constellation of factors contributed to late diagnosis. Several children (n = 22; 73.3%) presented with developmental/medical issues, 15 of whom also had middle ear dysfunction at assessment, and 9 of whom had documented family follow-up concerns. For the remaining eight children, additional reasons included ongoing middle ear dysfunction for five children, complicated by family follow-up concerns (n = 3) and mild hearing loss (n = 1) and the remaining three children had isolated reasons related to family follow-up (n = 1) or mild hearing loss (n = 2). CONCLUSION: Despite the progress made in the early detection of pediatric hearing loss since UNHS, a substantial number of children referred for early assessment can experience late confirmation and intervention. In particular, infants with developmental and/or medical issues including middle ear disorders are at particular risk for longer time to confirmation of hearing loss.

Children With Mild Bilateral and Unilateral Hearing Loss: Parents' Reflections on Experiences and Outcomes.

Children with mild bilateral and unilateral hearing loss are now commonly identified early through newborn hearing screening initiatives. There remains considerable uncertainty about how to support parents and about which services to provide for children with mild bilateral and unilateral hearing loss. The goal of this study was to learn about parents' experiences and understand, from their perspectives, the impact of hearing loss in the mild range on the child's functioning. Parents of 20 children in Ontario, Canada, participated in the study. The median age of identification of hearing loss was 4.6 months (interquartile range: 3.6, 10.8). Parents appreciated learning early about hearing loss, but their experiences with the early process were mixed. Parents felt that professionals minimized the importance of milder hearing loss. There was substantial uncertainty about the need for hearing aids and the findings suggest that parents need specific guidance. Parents expressed concerns about the potential impact of hearing loss on their child's development, particularly at later ages.

Development of a Draft Core Set of Domains for Measuring Shared Decision Making in Osteoarthritis: An OMERACT Working Group on Shared Decision Making.

OBJECTIVE: Despite the importance of shared decision making for delivering patient-centered care in rheumatology, there is no consensus on how to measure its process and outcomes. The aim of this Outcome Measures in Rheumatology (OMERACT) working group is to determine the core set of domains for measuring shared decision making in intervention studies in adults with osteoarthritis (OA), from the perspectives of patients, health professionals, and researchers. METHODS: We followed the OMERACT Filter 2.0 method to develop a draft core domain set by (1) forming an OMERACT working group; (2) conducting a review of domains of shared decision making; and (3) obtaining opinions of all those involved using a modified nominal group process held at a session activity at the OMERACT 12 meeting. RESULTS: In all, 26 people from Europe, North America, and Australia, including 5 patient research partners, participated in the session activity. Participants identified the following domains for measuring shared decision making to be included as part of the draft core set: (1) identifying the decision, (2) exchanging information, (3) clarifying views, (4) deliberating, (5) making the decision, (6) putting the decision into practice, and (7) assessing the effect of the decision. Contextual factors were also suggested. CONCLUSION: We proposed a draft core set of shared decision-making domains for OA intervention research studies. Next steps include a workshop at OMERACT 13 to reach consensus on these proposed domains in the wider OMERACT group, as well as to detail subdomains and assess instruments to develop a core outcome measurement set.

Leisure in children and adolescents with juvenile idiopathic arthritis: a systematic review.

UNLABELLED: The aim of this systematic review is to describe participation in social and physical leisure activities among children and adolescents with JIA, as well as identify potential determinants of leisure participation. METHODS: Electronic databases were systematically searched for articles published up until June 2013 pertaining to participation in leisure activities among youth with JIA and other rheumatic diseases. Studies were included if they measured involvement in either social or physical leisure activities. Selection and quality appraisal of articles were completed independently by two authors. RESULTS: Eight hundred and ninety-three articles were found through electronic and reference search. One hundred and nine full articles were reviewed to assess for eligibility. Twelve articles met inclusion criteria and findings were reviewed. Most focused on describing participation in physical rather than social activities. Results suggest that youth with JIA participated less in both social and physical leisure activities as compared to healthy peers, and those with JIA did not meet national recommendations for physical activity. Potential determinants of leisure participation were socio-demographic (age, sex), anthropometric (height, weight) and disease-related (JIA subtype, disease duration, pain, number of swollen or painful joints, stiffness, fatigue, well-being) factors. CONCLUSION: Characterization of leisure activity remains limited and mostly focused on physical activity in JIA. Assessment of more comprehensive outcome measures is warranted to obtain a better description of leisure in this population. Evidence of the influence of contextual factors as potential determinants of involvement in leisure among children with pediatric rheumatologic diseases is needed.