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
