Background: Person-centred service delivery underpins current approaches to working with individuals with intellectual disabilities. We investigated views of staff from a service organisation regarding their roles in creating desired futures for adults with intellectual disabilities. Methods: Data were gathered from staff of a large organisation…

Background: Much of the research and program innovation regarding future planning for adults with intellectual disabilities has occurred in countries with well-developed disability service systems. This study explored how family caregivers planned for their adult children's future caregiving needs in Romania, a country with a limited array of…

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: Toothbrushing, limiting intake frequency, and scheduled visits to an oral healthcare professional (OHP) are key for good oral health. We aimed to explore factors influencing these oral health behaviours in Dutch adolescents with mild to borderline intellectual disabilities (MBID) in residential care. Method: Using a qualitative,…

Background: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. Method: In-depth interviews were…

Background: Studies on the writing of students with intellectual disabilities have been scarce and unrepresentative. Therefore, the purpose of this research was to analyse this group of students' abilities to plan their texts. Method: A collective case study was carried out, with an eminently qualitative approach, although aided by an initial…

Background: Study of frailty in adults with intellectual and developmental disabilities (IDD) is relatively new. To build the body of literature, an international consensus statement on how to support adults with IDD as they become frail was developed based on fictional cases. This study examined the face validity and applicability of the…

Background: Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to…

Background: In families with a member with a developmental disability (DD), future care planning is limited (Brennan et al., Journal of Applied Research in Intellectual Disabilities, 31, 2018, 226; Bowey and McGlaughlin, British Journal of Social Work, 31, 2007, 39; Davys et al., Journal of Intellectual Disability, 14, 2010, 167; Davys et al.,…

Background: As adults with intellectual and developmental disabilities (IDD) have longer lives, parents may remain caregivers into old age. In addition, it is unknown who will fulfil caregiving roles after parents are no longer able to be caregivers. In the current study, we explored the nature (e.g. number of hours of caregiving) and correlates…

Background: Studies on preparedness of parents of adolescents living with intellectual disabilities transitioning from school to adulthood are scarce in sub-Saharan Africa. This study explored views of parents on their preparedness to handle adolescents transitioning from special schools to adulthood. Methods: Descriptive qualitative method was…

Background: This study explored the way families support self-determination in young adults with intellectual and developmental disabilities (IDD) during life transitions. Method: Qualitative case studies were conducted with two Canadian families who participated in semi-structured interviews and ethnographic observations every quarter for one…

Background: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those…

Background: Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known. Method: A qualitative study was conducted to explore the barriers and facilitators to planning with…

Background: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods: Semi-structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an…