Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via…

Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and…

The purpose of this qualitative phenomenology design was to describe the experiences of caregivers to adults with I/DD in the State of Texas. The theory guiding this study was the social constructivism framework which focused on how language and culture frame how individuals communicate, experience, and understand reality. In this study, the…

Background: History starts from where we are now - it is not just things that happened a long time ago. The global pandemic began in 2019. It has changed the lives of people with learning disabilities. We began our project during the first lockdown in April 2020. We came together to set up a website to collect stories and support and learn from…

Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability…

Little is known about OCD in people with learning disabilities (LD) in general and in terms of current and professional support. In this study, we examined caregivers' perceived challenges and strategies practiced in institutionalized settings in managing OCD in people with LD and derived implications for research and practice. We studied…

Background: Sleep is an important physiological need for children with intellectual disabilities and their mothers. The present study aims to obtain detailed information on the factors that are hindering and facilitating the sleep quality of children with intellectual disabilities and their mothers. Method: Twenty-one mothers of children with…

Introduction: There is evidence of a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive treatment. The purpose of this study (n = 15) was to begin to understand the treatment gap from the perspective of family caregivers. Methods: In…

The impact of disability on families can vary greatly and depends directly on the coping ability of each family system. The purpose of this research is to analyze the functioning of 535 families of children with intellectual disability using the FACES-20Esp scale, identifying different types of families according to the variables of cohesion and…

Students with an intellectual disability are increasingly attending inclusive postsecondary education programs (IPSEs) to equip them to thrive in adult-life environments. Students within these programs receive support in various areas, such as academics, employment, social engagement, personal development, and independent living. While It is well…

Many people with intellectual disabilities (ID) depend on caregivers for pain identification and pain management decisions. Therefore, the aim was to explore caregivers' experience with pain in Prader-Willi syndrome (PWS), Williams syndrome (WS), and Fragile-X syndrome (FXS). A questionnaire was developed to gather third-party reporting of mainly…

It is imperative that we devote resources and research effort to find out what is going on in families where there is a member with Intellectual and Developmental Disabilities (IDD) over the course of the COVID 19 pandemic and how adaptations can be made to provide the most effective help. This article discusses the need for more research to be…

Background: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. Methods: We conducted exploratory…

Twelve pilot project participants with intellectual and/or developmental disabilities used mobile devices (smartwatch and smartphone technology) and individualized apps focused on time management, coping, budgeting, exercise, and safety to support independence and community engagement. Ten participants with intellectual and/or developmental…

In this research, it is aimed to determine the problems that are faced by parents who have mentally disabled children and evaluate coping strategies of them. Interview technique is performed in this study which is designed in qualitative model. Study group which was determined by purposeful sampling method is consisted from the parents of mentally…