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.

Perspectives on "Disease" and "Disability" in Child Health: The Case of Childhood Neurodisability.

Chronic health conditions are often associated with what is termed disability. Traditional thinking has focused on diagnosis and treatment of chronic diseases and disorders, with less attention to people's functional abilities and their contextual determinants. Understanding all of these factors is integral to addressing the predicaments and needs of persons with chronic conditions. However, these complementary yet distinct "worldviews" reflected in what we call disease and disability perspectives often remain, at best, only vaguely articulated. In this paper, we explore and expand on these perspectives in light of conceptual advances, specifically the framework of the World Health Organization's International Classification of Functioning, Disability and Health, and their epistemic underpinnings with reference to Wilhelm Windelband's notions of nomothetic and idiographic types of knowledge. Our primary focus is the children with neurodisability - life-long conditions that onset early in life and have functional consequences that impact developmental trajectories. We critically review and analyze conceptual material, along with clinical and research evidence relevant to the experiential and clinical realities of this population, to demonstrate the limitations of a biomedically based diagnostic-therapeutic paradigm at the expense of a developmental and disability-oriented perspective. Our main aim in this paper is to argue for an explicit recognition of both disease and disability perspectives, and a more balanced and appropriate deployment of these concepts across the continuum of clinical services, research, policy-making and professional and public education in relation to children with neurodisability; we also provide concrete recommendations to advance this progressive strategy. The relevance of these aims and strategies, however, extends beyond this particular population.