"Live It to Understand It": The Experiences of Mothers of Children With Autism Spectrum Disorder.

Mothers of children with an autism spectrum disorder (ASD) variably experience challenges in their caregiving role. This ethnographic study examined the caregiving experiences of mothers of a young person with ASD (aged ≤25 years). Semistructured interviews were conducted with 85 mothers across three Canadian regions.

The Coconstruction of Couples' Roles in Parenting Children With a Chronic Health Condition.

In this study we explored the ways that mothers and fathers of children who have a chronic health condition coconstructed their parenting roles. We wanted to move beyond the standard focus on individual parenting behaviors and use a grounded theory approach to better capture the dyadic and interpersonal gestalt of how parents worked out their roles. We explored multiple factors that influenced their decision making and the unique models that each couple developed.

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study.

Background: The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child's major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).

Development of an online information and support resource for adolescent idiopathic scoliosis patients considering surgery: perspectives of health care providers.

Background: Adolescents with idiopathic scoliosis who are considering spinal surgery face a major decision that requires access to in-depth information and support. Unfortunately, most online resources provide incomplete and inconsistent information and minimal social support. The aim of this study was to develop an online information and support resource for adolescent idiopathic scoliosis (AIS) patients considering spinal surgery.

Evaluation of an information resource for parents of children with autism spectrum disorder.

This study sought to evaluate a newly created information resource book for parents of children newly diagnosed with Autism Spectrum Disorder entitled Autism Spectrum Disorder: Information for Parents. A purposive sample of 13 participants (comprised of mothers of children with ASD and ASD service providers) participated in 1 of 3 focus groups. Focus group participants provided their feedback regarding the accessibility, usefulness, content accuracy and tone of the resource book.

Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis.

Background: Informed decision making for adolescents and families considering surgery for scoliosis requires essential information, including expected outcomes with or without treatment and the associated risks and benefits of treatment. Ideally families should also receive support in response to their individual concerns. The aim of this study was to identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery.