Social-ecological considerations informing a universal screening strategy for sleep health in the community

“Poor sleep health” (PSH), defined as reduced amount of sleep and non-restorative sleep, affects cognitive, social and emotional development. Evidence suggests an association of sleep deprivation and mental health problems; however, there are no universal concepts allowing a first-tier screening of PSH at a community level. The focus of this narrative review is to highlight the cultural context of the current medicalized approach to PSH and to suggest social ecological strategies informing new and holistic community-based screening concepts. We present two conceptual screening frameworks; a “medical” and a merged “social emotional wellbeing framework” and combine them utilizing the concept of “ecologies.” The first framework proposes the incorporation of “sleep” in the interpretation of “vigilance” and “inappropriate” labeled behaviors. In the first framework, we provide a logic model for screening the myriad of presentations and possible root causes of sleep disturbances as a tool to assess daytime behaviors in context with PSH. In the second framework, we provide evidence that informs screening for “social emotional wellbeing” in the context of predictive factors, perpetuating factors and predispositions through different cultural perspectives. The distinct goals of both frameworks are to overcome training-biased unidirectional thinking and a priori medicalization of challenging, disruptive and/or disobedient behaviors. The latter has been explicitly informed by the critical discourse on colonization and its consequences, spearheaded by First Nations. Our “transcultural, transdisciplinary and transdiagnostic screening framework” may serve as a starting point from which adaptations of medical models could be developed to suit the purposes of holistic screening, diagnosis, and treatment of complex childhood presentations in different cultural contexts

Gymnastic-Based Movement Therapy for Children With Neurodevelopmental Disabilities: Results From a Pilot Feasibility Study

Background: Developmental and behavioral issues often limit the participation of children with neurodevelopmental disabilities (NDD) in community-based activities with their peers, which decreases opportunities for their social learning and development. Parents of children with NDD seek out programs that address physical and psychosocial development. Several studies already support the positive effects for the child to attend physical activity programs (PAPs). However, these studies are highly prone to biases and Hawthorne effect. In the planning stage of a large prospective study to assess the effectiveness of PAPs we reviewed the records of children who participated in a gymnastic-based program, the Empowering Steps Movement Therapy (ESMT). Besides generating useful data for developing the prospective study we thought these data reflect the rate of changes in context of normal practice in a naturalistic environment; therefore protected from Hawthorne effect and other biases.Design: This is a historical cohort: the files of 67 children with NDD were examined across a 2-year period (Jan 2011 to Jan 2013). As part of standard practice, the ESMT therapists document changes in motor function every 6 months, using the ESMT's proprietary motor scale. Parents also completed a parental questionnaire in June 2011 regarding their perceptions of changes in their child's physical and psychosocial function, as well as family functioning since their child started the program.Results: Linear Mixed Effects Model clearly identified three groups according to changes in motor function: the ones with rapid changes (mostly functional children with autism spectrum disorder: n = 13), the ones with moderate changes (different types of NDD diagnoses: n = 41) and the ones that did not change or even decreased motor skills over the follow-up (children with complex diseases or uncontrolled epilepsy despite treatment: n = 13). Parental questionnaires (n = 39) reported improvement in most of the children's physical and psychosocial abilities; they also indicated improvement in some of the family parameters. There was no association between the changes in children's motor functions and parents' responses to the questionnaire.Conclusion: Despite limitations due to the retrospective nature of the study, the absence of a control group and the absence of validated measurement tools, the observed positive effects of attending movement therapy center on motor performance and psychosocial development confirm in a naturalistic environment what has been shown in context of clinical trials or quasi-experimental studies. These results are not conclusive. They warrant further, rigorous investigation using validated instruments, independent assessors, and control groups

Hearing Impaired families: The social ecology of hearing loss

The services available to parents of children with hearing losses, and the options concerning the modes of communication and the educational programs for their children, have significant effects on family relations and the family's understanding of hearing impairment and deafness. This is particularly true in rural areas of British Columbia, Canada, where the range of programs is limited. This paper examines the programs available, parents' understandings of their options, the decisions they make, and the impact on the family of the selection and availability of programs.hearing impairment disability family deafness

Continuity of care for children with complex chronic health conditions: parents' perspectives

Background: Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population. Methods Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. Results Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors. Conclusions These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.Anthropology, Department ofArts, Faculty ofPediatrics, Department ofPopulation and Public Health (SPPH), School ofNon UBCMedicine, Faculty ofReviewedFacult

Continuity of care for children with complex chronic health conditions: parents' perspectives

Abstract Background Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population. Methods Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. Results Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors. Conclusions These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.</p

Impacts of Participation in Community-Based Physical Activity Programs on Cognitive Functions of Children and Youth with Neurodevelopmental Disabilities: A Scoping Review

This review paper aimed to undertake an extensive exploration of the extent, range, and nature of research activities regarding the effect and emerging evidence in the field of physical activity interventions on cognitive development among children and youth (0–17.99 years) with neurodevelopmental disorders (NDD), and to help identify key gaps in research and determine precise research questions for future investigations. To carry out this scoping review, five electronic databases were searched. A total of 12,097 articles were retrieved via search efforts with an additional 93 articles identified from the identified review papers. Sixty articles were eligible for inclusion. The results of this scoping review revealed many positive key cognitive outcomes related to physical activity including, but not limited to: focus, attention, self-control, cognitive process, and alertness. No studies reported a negative association between physical activity and cognitive outcomes. Based on the findings from this scoping review, physical activity appears to have a favorable impact on the cognitive outcomes of children and youth with NDD.Arts, Faculty ofMedicine, Faculty ofScience, Faculty ofNon UBCAnthropology, Department ofPediatrics, Department ofReviewedFacult

Engaging Pediatric Intensive Care Unit (PICU) clinical staff to lead practice improvement: the PICU Participatory Action Research Project (PICU-PAR)

Background: Despite considerable efforts, engaging staff to lead quality improvement activities in practice settings is a persistent challenge. At British Columbia Children’s Hospital (BCCH), the pediatric intensive care unit (PICU) undertook a new phase of quality improvement actions based on the Community of Practice (CoP) model with Participatory Action Research (PAR). This approach aims to mobilize the PICU ‘community’ as a whole with a focus on practice; namely, to create a ‘community of practice’ to support reflection, learning, and innovation in everyday work. Methodology: An iterative two-stage PAR process using mixed methods has been developed among the PICU CoP to describe the environment (stage 1) and implement specific interventions (stage 2). Stage 1 is ethnographic description of the unit’s care practice. Surveys, interviews, focus groups, and direct observations describe the clinical staff’s experiences and perspectives around bedside care and quality endeavors in the PICU. Contrasts and comparisons across participants, time and activities help understanding the PICU culture and experience. Stage 2 is a succession of PAR spirals, using results from phase 1 to set up specific interventions aimed at building the staff’s capability to conduct QI projects while acquiring appropriate technical skills and leadership capacity (primary outcome). Team communication, information, and interaction will be enhanced through a knowledge exchange (KE) and a wireless network of iPADs. Relevance: Lack of leadership at the staff level in order to improve daily practice is a recognized challenge that faces many hospitals. We believe that the PAR approach within a highly motivated CoP is a sound method to create the social dynamic and cultural context within which clinical teams can grow, reflect, innovate and feel proud to better serve patients.Anthropology, Department ofArts, Faculty ofEmergency Medicine, Department ofMedicine, Faculty ofPediatrics, Department ofOther UBCNon UBCReviewedFacult

Characteristics of mobile phone access and usage among caregivers in Pakistan - A mHealth survey of urban and rural population

Introduction: Globally mobile ownership and access is becoming very common, and breakthroughs in mobile technology have shaped digital communication, with 7 billion mobile phone users globally. Developing countries account for 80% of newly purchased mobile phone devices with majority of such countries having low Routine Immunization coverage and a high risk of vaccine preventable diseases. The use of mobile phones provides a tremendous potential for public health involvement.Objective: The aim of this study is to assess the acceptability and usability of mobile phones among infant caregivers in a LMIC setup and to explore the role of mHealth to improve immunization uptake and coverage.Methods: This is a cross-sectional survey exploring the regional differences in mobile phone ownership, usability and preferences, along with level of trust with others while sharing a mobile phone. The study was conducted with caregivers of infants in an urban and rural sites of Pakistan.Results: A total of 4472 households were approached, of which 3337 participants were eligible for the study (74.61 %). The reasons for not participating in the study (n = 1135) included (i) household locked or refusal to participate for 594 families (52%), (ii) child older than 14 days of life in 409 cases (36%), (iii) 80 (7%) families did not have access to a functional mobile phone, (iv) 36 (3%)families did not provide a mobile phone number, and (v) 14 (1%) could not stay within the HDSS for 6 months. Access to mobile phone with SMS features was considerably high at both sites: 99.1% in Matiari (rural site) and 96.7% in Karachi (urban). In Matiari 96.6% of the respondents reported having daily access to the phone, contrasting with only 51.4% in Karachi. In Karachi, the predominant spoken language was Urdu, whereas majority of the respondents in Matiari spoke Sindhi (34.6% vs. 70.9%).Conclusion: Our study indicates high access to mobile phone in both urban and rural setup, However access to smart phone is still limited, urban and rural setup. Further, the acceptance of overall health- and barrier-based child immunization messages through mobile phone were quite high in both settings. Lastly automated calls were preferred over SMS due to literacy and local settings. This bears important implications for improving child immunization uptake through mobile phones in developing regions such as Pakistan