Organising healthcare services for persons with an intellectual disability

Abstract

There is very limited evidence on the organisation of healthcare services for persons with an intellectual disability. There are currently no well-designed studies focusing on organising the health services of persons with an intellectual disability and concurrent physical problems. There are very few studies of organisational interventions targeting mental health needs and the results of those that were found need corroboration. There is an urgent need for high-quality health services research to identify optimal health services for persons with an intellectual disability and concurrent physical problem.

Family members and health care workers' perspectives on motivational factors of participation in physical activity for people with intellectual disability: A qualitative study

“…Compared with the general population, individuals with intellectual disabilities (IDs) have worse health, lower levels of physical activity (PA) and higher barriers for participation in activities and access to health care (Walsh 2008;Evans et al 2012;Hilgenkamp et al 2012;Balogh et al 2016;Temple et al 2017;Wouters et al 2019). PA is the term used to describe bodily movement produced by skeletal muscles that require energy expenditure (World Health Organization 2004 and can be further defined by types of activities and intensity categories.…”

Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

“…Service planning, end of life decision making, and recognition of the psychosocial issues experienced by the person with intellectual disability and their family caregivers were also featured(Tuffrey-Wijne et al 2007a).Similar issues surrounded the role of paid staff (n=32) in the provision of palliative care for people with intellectual disabilities(Tuffrey-Wijne et al 2007b). Study findings support other intellectual disability literature(Tuffrey-Wijne et al 2007a;Lunsky et al 2014;Balogh et al 2016) in promoting identification of: family issues, assessment problems, emotional fears, and considering the effectiveness of good communication between staff, patient and carers. Tuffrey-Wijne et al (2007b) recommended staff are trained in intellectual disability, and the expertise of the family caregivers recognised.…”

“…Two reviews were specific to Cancer caregiving (Bee et al 2009;Wheelright et al 2015), and Lunsky et al (2014) and Balogh et al (2008Balogh et al ( , 2016 explored caregiving in intellectual disability. One review focused on post Stroke care (Forster et al 2012), another, chronic health conditions (Washington et al 2011), and a further review considered caring for elderly (Silva et al 2013).…”

“…European level policy and recommendations attempt to reduce pockets of marginalisation and assumptions, promoting the involvement and support of family caregivers in palliative care and intellectual disability (DH 2008a, 2008b; Radbruch and Payne 2010; Tuffrey-Wijne et al 2016). However, services remain fragmented and difficult to access (McLaughlin et al 2014b; Tuffrey-Wijne et al 2016).This extends internationally(Kirkendall et al 2012;Balogh et al 2016).Phase 2 keywords: Family care* OR Informal care* AND Intellectual disabilit* OR Learning Disabilit* OR Developmental disabilit* AND OR Information OR Information needs AND Palliative care OR End of life OR Hospice Inclusion: Published papers. Informal or family caregivers.…”

Rehabilitation service utilisation among adults with intellectual disabilities: Trends and socioeconomic disparities in China

“…However, adults with IDs often have more difficulties in finding, getting to and paying for rehabilitation services (Balogh et al . ). Measuring the utilisation of rehabilitation for people with IDs is very useful for future service provision for this population (Lin et al .…”