Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Abstract

Persons with profound intellectual and multiple disabilities (PIMD) have an estimated IQ below 20. They have profound neuromotor dysfunctions, often accompanied by sensory impairments and medical problems, such as seizures, respiratory and feeding problems (Nakken & Vlaskamp, 2007). Persons with PIMD have little or no understanding of verbal language and no apparent symbolic interaction with objects and are therefore always dependent on others (Nakken & Vlaskamp, 2007). This dependency means that parents of persons with PIMD play a large, often lifelong (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001), role in the lives of their child. Although most people with PIMD live in professional care settings, some of them, in all age groups, live at home. Rough estimations in the Netherlands suggest percentages of between 2.4% and 13% of people with PIMD being cared for in their family home (Schuurman, 2010; Vlaskamp, 2002; Vugteveen, Putten, & Vlaskamp, 2014). However, the ambiguous description of the group in literature and surveys makes that especially the numbers of people with PIMD living at home may be underestimated (Vugteveen et al., 2014). The literature suggests that parents have unique and crucial knowledge of their child with PIMD, which helps them, for example, to improve the support and care of the child, regardless of whether the child is living at home or not (Gauthier-Boudreault, Gallagher, & Couture, 2017; Jokinen & Brown, 2005). For example, if persons with PIMD live at a residential care facility or go to a day activity centre, parents are often involved in personalizing the care for their child, monitoring this care and making decisions on

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities

“…They can also be advocates by using their knowledge opposed to the objectivism of medical approaches and by translating their knowledge so it is more accepted within health care and medicine. This knowledge, gathered through intensive interactions, is transferable and may help others acquiring a deeper understanding of the person with PIMD (Kruithof et al, 2020). Also, for research to be truly inclusive, the research question that is explored has to be owned or have relevance to those involved and they should have the possibility to really influence (part of) the research process (Gjermestad & Skarsaune, 2019).…”

“…Therefore, two commonly used methods are proxy reports and behavioural observation. By using proxy reports, researchers incorporate the expertise of those who have the most experience with and the most intimate knowledge of the person with PIMD (Kruithof, Willems, van Etten‐Jamaludin, & Olsman, 2020; Petry, Maes, & Vlaskamp, 2009). However, using proxy reports also challenges the researcher to reflect on the degree to which the report really approximates the participant's perspective.…”

Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review

“…Also, parents play a vital role in the education and personal development of a child as they usually are the first and longest lasting carers ( Jansen et al, 2017 ). It is increasingly recognised that parents of a child with a disability are the experts with regard to their own child and that they can provide professionals with valuable information ( Kruithof et al, 2020 ). In addition, concerning societal changes, the realisation of a participation society places increasing demands on a family's informal network and social communities ( Da Roit and De Klerk, 2014 ; Delsen, 2016 ).…”

Relationships matter! — Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities

“…Overall, the central role of mothers in advocating for their children and caring for and about them stood out. Research has long highlighted the central role mothers play in the lives of their disabled children (Kruithof et al, 2020; Rogers, 2016), showing how mothers and their children's lives are closely intertwined and needs are interdependent. Our two studies show that the family often remains the main and only social network outside of professional systems in the lives of people with severe intellectual disability (Kamstra et al, 2015), but our findings also add to an awareness that professionals and people can form close relationships (Hall, 2010; Power, 2013).…”