Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review.

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) "peer support networks," (ii) "children with neurodevelopmental and intellectual disabilities" and (iii) "family caregiver outcomes." Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.

Women's experiences of skin-to-skin cesarean birth compared to standard cesarean birth: a qualitative study.

BACKGROUND: Skin-to-skin contact between mother and infant immediately after birth is recommended regardless of delivery method; however, it is less common after cesarean delivery. We aimed to describe and compare women's experiences of cesarean birth with and without skin-to-skin contact at an urban tertiary care hospital. METHODS: In this hermeneutic phenomenologic study, we used semistructured telephone interviews from 2015 to 2018 to interview a convenience sample of women who delivered at term by scheduled skin-to-skin cesarean birth at an urban tertiary care hospital in Toronto, Ontario. Women were invited to participate if they had had a previous planned or unplanned cesarean birth and a scheduled skin-to-skin cesarean birth between 2013 and 2017. Participants were excluded if they had antenatally diagnosed conditions, they delivered before 37 weeks, they had general anesthesia, their condition was unstable at the time of surgery, a skin-to-skin cesarean birth was not possible or they declined skin-to-skin cesarean birth. Interviews were recorded, transcribed and analyzed by means of thematic analysis. RESULTS: Ten women were interviewed 1-19 months postpartum. Four central themes emerged: support for skin-to-skin cesarean birth (women feeling supported by their families and health care providers); control (participants experiencing greater control during their skin-to-skin cesarean birth); connection with the infant, which enabled women to be active participants in their delivery, enhanced bonding and intimacy, facilitated breastfeeding and bolstered confidence during early parenthood; and logistic considerations, with participants recognizing that skin-to-skin cesarean birth required additional resources. INTERPRETATION: These findings refine what is known about skin-to-skin cesarean birth and provide a critical perspective, that of mothers. They support the transformation of traditional operating room dynamics to a more patient-centred environment.

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.

The Big D(eal): professional identity through discursive constructions of 'patient'.

CONTEXT: Professional identity formation has become a key focus for medical education. Who one becomes as a physician is contingent upon learning to conceptualise who the other is as a patient, yet, at a time when influential ideologies such as patient-centred care have become espoused values, there has been little empirical investigation into assumptions of 'patient' that trainees take up as they progress through their training. METHODS: Our team employed a critical discourse analysis approach to transcripts originally produced from a micro-ethnography of medical student learning on an acute care in-patient paediatric ward. The dataset included 20 case presentations and 14 sign-over rounds taken from a 3-week observation period. We paid specific attention to how trainees used language to talk about, refer to and categorise patients. RESULTS: Identified discourses included patient-as-disease-category, patient-as-educational-commodity and patient-as-marginalised-actor. These discourses conceptualise 'patient' as an entity that is principally biomedical, useful for clinical learning and spoken for and about. Medical student participation in these discourses contributes to an identity that allows them to move further into the professional medical world they are joining. CONCLUSIONS: We contend that as learners participate in these discourses, they are also performatively produced by them. By making these discourses visible, we can consider how to minimise unintended effects such discourses may cause. Our findings, although limited, offer a glimpse of the effects that those assumptions may have as we look to align better the formation of professional medical identity with the ideals of patient-centred care and socially responsible health care systems.

Adapting the forms of yesterday to the functions of today and the needs of tomorrow: a genealogical case study of clinical teaching units in Canada.

Emergent discourses of social responsibility and accountability have in part fuelled the expansion of distributed medical education (DME). In addition to its potential for redressing physician maldistribution, DME has conferred multiple unexpected educational benefits. In several countries, its recent rise has occurred around the boundaries of traditional medical education practices. Canada has been no exception, with DME proliferating against a backdrop of its longstanding central node, the clinical teaching unit (CTU). The CTU first appeared just over 50 years ago with its position in Canadian health care largely taken-for-granted. Given the increasing prominence of DME, however, it is timely to reconsider what the place of tertiary centre-based practices such as the CTU might be in shifting medical education systems. From a genealogical perspective, it becomes clear that the CTU did not just "happen". Rather, its creation was made possible by multiple interrelated cultural, social, and political changes in Canadian society that, while subtle, are powerfully influential. Making them visible offers a better opportunity to harmonize the benefits of longstanding entities such as the CTU with novel practices such as DME. In so doing, the medical education field may sidestep the pitfalls of investing significant resources that may only produce superficial changes while unwittingly obstructing deeper transformations and improvements. Although this work is refracted through a Canadian prism, reconceptualizing the overall design of medical education systems to take advantage of both tradition and innovation is a persistent challenge across the international spectrum, resistant to tests of time and constraints of context.

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.

"They silently live in terror " why sleep problems and night-time related quality-of-life are missed in children with a fetal alcohol spectrum disorder.

Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Children's Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs' systemic inattention to the sequelae of SPs and the affected family's wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents' contributions in recognizing SPs and related sequelae in designing appropriate treatment and care.

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.