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Siblings' and parents' perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study.
J Intellect Dev Disabil
December 2021
Department of Spiritual Care & Chaplaincy studies, Protestant Theological University, Amsterdam, the Netherlands.
Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents.
Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically.
Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility.
Caregiver perceptions of care of a medical-dental community clinic for adults with autism and intellectual disabilities: Implementing a program evaluation.
J Intellect Dev Disabil
December 2021
School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, Canada.
Background: Providing medical and dental care for adults with developmental disabilities requires specialised care that includes caregiver's perceptions of processes of care as integral to informing care delivery.
Method: We examined the reach and efficacy of a medical-dental clinic serving adults with developmental disabilities as part of a program evaluation in the community setting. Using the RE-AIM framework, we analysed caregivers' perceptions of the processes of care and associations with sociodemographic factors and stress and depression levels.
Reducing restrictive measures in complex long-term care for people with intellectual disabilities: Implementation interventions through the lens of normalisation process theory.
J Intellect Dev Disabil
December 2022
Section of Clinical Child and Family Studies, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Background: The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play.
Methods: Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group.
Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports.
J Intellect Dev Disabil
December 2022
Department of Teacher Education, Webster University, Saint Louis, MO, USA.
Background: Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic.
Method: We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021.
Results: A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services.
Diverse perspectives on supporting the health and wellness of people with intellectual and developmental disabilities.
Disabil Health J
January 2025
Institute for Exceptional Care, 1717 K Street NW, Suite 900, Washington, DC, 20006, USA. Electronic address:
Background: Persons with intellectual and/or developmental disabilities (IDD) are a growing population, frequently living with complex health conditions and unmet healthcare needs. Traditional clinical practice and research methods and measures may require adaptation to reflect their preferences.
Objective: The perspectives of people with IDD, caregivers/partners, and clinicians were obtained to provide insight into factors contributing to the health and wellness of people with IDD.
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