Background: People with intellectual disabilities are rarely involved in end-of-life decisions. This study investigated and further developed approaches and resources to enable inclusive end-of-life care planning. Methods: A multi-centre, multi-method four-phase study, involving 195 researchers, participants, advisors and co-design members,…

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: People with disabilities face persistent employment difficulties, mainly because of a lack of recognition of their competencies, especially people with intellectual disabilities. As employment counsellors need to identify the competencies of beneficiaries, a public competencies identification service has been developed and funded by…

Background: In partnership with PHSS, a community care agency in London, Ontario, we describe the person-centred planning model. Person-centred plans (PCPs) are mandated in the community care sector and created annually through discussions with the person-supported, staff, family/friends and community members. PCPs are individualised, integrated…

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: 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: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11)…

Background: Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the…

Background: As individuals with intellectual and developmental disabilities age, their siblings are more likely to assume caregiving responsibilities. However, little is known about experiences of East Asian siblings with respect to their caregiving and future-planning within their own country, as well as other East Asian countries. Methods: Using…

Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. Methods: A cross-sectional survey was distributed to caregivers of…

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: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning…