Background: Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by…

Caregiver coaching is an evidence-based practice for autistic children that is poorly implemented in community-based early intervention. Previous studies have identified factors that influence implementation of caregiver coaching in early intervention; however, multi-informant (e.g., caregiver, provider, leadership) qualitative research is…

The purpose of this study was to provide an in-depth understanding of the challenges Ugandan parents of children with autism face. Caring for a child with autism poses unique challenges to families and deserves tailor-made remedies. Autism is understudied in Uganda and Africa. This qualitative study reports on results from focus group discussions…

For caregivers of people living with major neurocognitive disorders (MNCD), adapting and applying methods optimizing learning (MOL) to a specific situation, based on preserved cognitive skills, can be challenging. This study aimed to 1) co-develop workshops, a web application and accompanying materials to support the operationalization of MOL; 2)…

Caregiver coaching is an evidence-based practice for young autistic children, but it is not widely used in community-based early intervention services. Previous research has explored why caregiver coaching is not widespread in early intervention, but only from the perspective of early intervention providers. Caregivers, providers, and…

The COVID-19 pandemic presented unprecedented challenges particularly among group homes for individuals with intellectual and developmental disabilities (IDD) given the close interactions and living arrangements of residents. Thus, the purpose of this project was to determine if an educational intervention focused on COVID-19 and COVID-19…

Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…

Background: Despite the enactment of disability laws/policies in India, research shows that caregivers of adults with intellectual and/or developmental disabilities experience inadequate formal supports/services due to dissemination barriers and lack of awareness about them. To address discrepancy between caregivers' support needs and the…

Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. Methods: We conducted focus groups with 49 primary caregivers of individuals with…

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured…

A select few African American families who have a child with a disability have the skills and knowledge to be proactive in the special education process. Special education teams must guide and mentor African American students and their families through the special education process. However, African American families have consistently contended…

The World Health Organization's Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child's development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian…

Background: Evidence suggests that parents with intellectual disabilities can be "good enough" parents with appropriate support that focuses on the whole family. This paper brings together theories of vulnerability with an ethics of care approach to reflect on challenges for practitioners in supporting parents, drawing upon data from a…

The intersection of mass incarceration and fatherhood is of particular interest to a growing number of scholars, policymakers, and practitioners. In this study, the role of fathers in children's lives before and during imprisonment are investigated from the caregiver perspective. Reliance on caregivers' accounts offers valuable insight into the…

Large increases in the need for long-term care (LTC) services are expected as baby boomers age. Little has been published about patient and caregiver preferences for information about LTC. However, our qualitative research findings suggest that potential consumers may find it difficult to obtain accurate and timely information about LTC programs…