Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability.

BACKGROUND: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. METHODS: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. RESULTS: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. CONCLUSIONS: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.

The role of parenting- and employment-related variables on fathers' involvement in their children's education.

BACKGROUND: Parent involvement strongly correlates with children's educational attainment. Sociocultural shifts in parenting roles and shared responsibilities have driven an increase in the need for involvement of fathers in activities to support their children's educational development. Several factors are thought to influence father involvement in children's education; however, the most salient factors remain unclear. AIMS: To examine which variables correlate with father involvement in their children's education using a combination of demographic, parent-related and employment-related variance. SAMPLE: A total of 166 fathers of at least one child aged 6-17 years and residing across five industrialized Western countries participated in an online survey. METHOD: Hierarchical multiple regression analysis (HMRA) was performed to examine the total and incremental variance using regression models including demographic, parenting- and employment-related variables linked to educational involvement. RESULTS AND CONCLUSIONS: The variables included in the current study could explain a large and statistically significant 34% of the variability in fathers' educational involvement. Of these variables, only four were statistically significant in the final model. Specifically, fathers were more likely to be engaged in their children's education when their children were younger, and when parent self-efficacy, positive work-to-family interface and financial anxiety were high. The study's findings indicate that a positive work environment can help fathers better support their children's education, offering a new focus for future interventions and policies. This includes those focused on targeting work-related constructs to optimize family functioning.