Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care

Understanding parent engagement in advanced allied health single session therapy for children with developmental and behavioural disabilities

“…This study has highlighted that establishing meaningful engagement during SST impacts parental confidence, competence, thoughts and feelings toward taking ownership of their child and family needs. Similarly, other studies have demonstrated this complexity of the parent state during engagement (Harniess et al, 2022;King et al, 2021;Kouo et al, 2022).…”

“…These parental outcomes are similar to other studies into SST, which identified that an improved understanding of a diagnosis reduced anxiety and stress and increased hope and the perceived ability to cope (Courtnage, 2020; Creen et al, 2023; John Westwater et al, 2020; Mulligan et al, 2022). Parental stress and anxiety frequently emerge in the literature, impacting families' trust in healthcare and the ability to engage in positive therapeutic actions (Kouo et al, 2022). Parents wish to be seen as competent, knowledgeable partners in their child's healthcare, seeking validation and support to understand their child and their parental decisions.…”

Updates in the care of youths with intellectual disability and autism spectrum disorder

“…The scientific community seems to converge on that care should be provided in accordance with principles of interdisciplinarity, life-span view, precision, personalization, and participation [26 ▪ ]. Identifying the key intervention needs requires the adoption of a holistic person-centred and family-centred approach, which considers all major aspects of a person's life and their family interrelated and involves a partnership among healthcare professionals, patients and families for information sharing, decision-making, planning, and delivery of care [41,42 ▪ ].…”

Pediatric sickle cell disease: A case for improved clinician‐family partnerships

“…Understanding and empathizing with the challenges and stressors families face helps us build mutual respect and partnerships with families is a foundational block of providing more equitable care that families seek for their children. 3,8 Furthermore, optimizing communication focused on shared medical decisions (SDM) is the key to family centered care-it empowers families to make decisions that are medically feasible while aligning with their values, culture, and strengths. 8,9 Together as a parent of children with SCD and physicians caring for patients with SCD, we argue that one of the most important factors in improving the experience of patients with SCD and their families is institutional prioritization of communication skills.…”

“…3,8 Furthermore, optimizing communication focused on shared medical decisions (SDM) is the key to family centered care-it empowers families to make decisions that are medically feasible while aligning with their values, culture, and strengths. 8,9 Together as a parent of children with SCD and physicians caring for patients with SCD, we argue that one of the most important factors in improving the experience of patients with SCD and their families is institutional prioritization of communication skills. Throughout our conversations, while writing this piece, one key theme emerged: the need for improved communication by the medical team.…”