In this article, we discuss findings of a hermeneutic phenomenological study that sought to describe the experiences of parents who have a child with autism. Qualitative interviews were conducted with parents from 16 families of children with autism residing in a western Canadian province. “Living in a world of our own” emerged as the essence of the parents' experiences. In “living in a world of our own,” parents described a world of isolation. Three themes representing the essential challenging elements of the parents' experiences included vigilant parenting, sustaining the self and family, and fighting all the way. Although much is known about the fundamental importance of support to parents of children with chronic conditions and/or disabilities, findings from this study indicate that knowledge has not been adequately transferred to the care of children with autism.

Increased numbers of children with chronic illnesses and/or disabilities who have complex care needs are living at home. Along with the transfer of care to the home setting, parents assume the primary responsibility of their child’s complex care needs. Accordingly, it becomes even more important to understand the evolving roles and challenges faced by parents of children with complex care needs in order to better support them. The aim of this paper is to present research findings that add to our understanding of the roles parents assume in parenting their children with complex care needs. To arrive at a detailed and accurate understanding of families’ perspectives and experiences, the qualitative research design of ethnography was used. In total, 68 parents from 40 families were recruited. Data collection strategies included ethnographic methods of interviewing and photovoice. Several levels of analysis generated a sociocultural theme with subthemes representing how parents experienced raising children with complex care needs within the context of their life situations. Intense parenting as the overarching theme refers to the extra efforts parents had to commit to in raising their children with complex care needs. Parenting was described as labour-intensive, requiring a readiness to provide care at any time. This left parents with minimal time for addressing any needs and tasks not associated with caring for their child. The main theme is supported by four sub-themes: 1) the good parent; 2) more than a nurse; 3) there’s just not enough; 4) it takes a toll on the health of parents. Overall, parents of children with complex care needs take on more roles as well as work more intensely at these roles than parents of healthy children. This, in turn, has led to the need for additional supports and resources for parents. However, to date, parents of children with complex care needs are still lacking adequate services and supports necessary to help them in their role of intense parenting. The findings sensitize professionals to the issues confronted by parents caring for children with complex care needs. Implications for further research and clinical practice are discussed.

Adolescents with cancer are confronted with many challenges. The extent to which they are able to deal with such challenges appears to be partly contingent on a positive strong social support system. In this article, the author describes findings specific to the sources of social support that 15 adolescents with cancer found to be most important in getting them through the cancer experience. Data were collected as part of a longitudinal qualitative interpretive study and involved individual interviews, focus group interviews, and participant observation as the main sources of data. The relationships that adolescents maintained with their nuclear families, health care team members, and special friends were the 3 main supportive relationships in the adolescents'lives. The act of others “being there” was seen by the adolescents as the key element of a supportive relationship and involved 6 main behaviors. Although the 3 key supportive relationships were essential in helping adolescents get through cancer, these relationships were at times a source of stress for adolescents.

Purpose. Although the use of assistive technology (AT) is by an individual, it occurs within a much larger socio-cultural environment. The purpose of this article is to describe and analyse current knowledge about the intersection of culture and disability in the context of the AT user. Methods. Literature review of theoretical and empirical study papers that discuss cultural aspects related to AT use or provision. Results. Understanding how an individual's culturally defined identity is shaped as an AT user, and the meaning the AT holds to that person and family, is essential to providing culturally appropriate AT services. AT providers also belong to a culture framed by their professional experiences; needed are ways of addressing ethnocentricity within culturally diverse practice settings. Some AT users may identify with a disability culture, a culture formed by a shared set of beliefs, values and behaviours around the construct of disability. Conclusion. This review reveals there is a paucity of knowledge about the intersection of AT and culture, and that this intersection requires further research. Embarking on this investigation is mandatory if we seek to meet the needs of the culturally diverse individuals who use AT.

Purpose: This mixed-methods systematic review synthesized findings from studies published between January 1, 2006 and July 31, 2018 on the social inclusion experiences of children with and without disabilities, as viewed from their own perspective, with a focus on how typically developing peers promote social inclusion. Method: Forty-five studies met the inclusion criteria. Data from included studies were synthesized by means of content analysis. Results: The findings detail the inner social inclusion experiences (e.g., feeling included, different) of children with disabilities and provide information regarding the influence of disability type (e.g., physical, social, affective) on typically developing peers’ responses (e.g., acceptance vs. rejection), peers’ explanations for social inclusion/exclusion, and peers’ relationships with children with disabilities. Barriers to social inclusion, supports, as well as strategies used to promote social inclusion, as perceived by peers and children with disabilities, are also reported. Conclusion: The findings of this review provide evidence that despite society’s efforts to promote social inclusion, children with disabilities continue to report feeling lonely and excluded, having limited contact socially outside of home, and encountering systemic barriers (e.g., bullying, discrimination). More research on the social inclusion experiences of children with disabilities beyond educational settings is needed, such as in the contexts of recreation and leisure, community, and employment.