Supporting Families With Parents With Intellectual Disability: Views and Experiences of Professionals in the Field

Abstract

Professionals and parents with intellectual disability often disagree on what support is needed and how it should be provided. Parents report having little say in the matter, feeling coerced into accepting services that they do not find useful. Professionals may describe the parents as difficult to engage and not open to receiving help. The aim of this article was to capture the views and experiences of professionals working with parents with intellectual disabilities. A qualitative analysis of focus group discussions was undertaken. Study participants described their work with client families as fraught with difficulty. Their accounts differed depending on whether the child was living with the parents or the child had been placed in out‐of‐home care. In the first situation, parental limitations and inability to meet the needs of their children were emphasized, with parents failing to recognize their own high support needs. In the second situation, the parental role was seen as important, and it was considered vital to continue to provide proper support to enable the parents' ongoing contact with their child and maintaining their parenting. The difference could be explained by lack of appropriate support and knowledge provided through the organizations at which the study participants worked, along with job stress. The author notes that study participants doubted the capacity of the parents to care for their children and were uncertain about how to best support them. Gaps were revealed in the way in which knowledge about families with a parent with an intellectual disability is produced and used by professionals.

An interview study of young adults born to mothers with mild intellectual disability

“…In an Australian study (Llewellyn et al, 2003) of care proceedings, 9% of the children had parents with IDs and thus this parent group is substantially overrepresented in care proceedings. Starke (2011) reported that views and experiences among professionals, working with parents with IDs, differed according to whether the child was living with the parent or the child had been placed in out-of-home care. When the child was living at home, the professionals were worried about the parental skills and the parents' inability to fulfill the needs of the child.…”

Parentalité et déficience intellectuelle : exploration des représentations sociales des intervenants impliqués

“…Cette croyance, qui peut s'expliquer par le manque de connaissances et de compréhension à l'égard de la DI et de ses conséquences sur la vie d'une personne (Booth, McConnell et Booth, 2006;Cleaver et Nicholson, 2007;McBrien et Power, 2002), peut se traduire par des présomptions erronées, des attentes inadaptées et des attitudes négatives à l'égard des parents ayant une DI/LI (McConnell et al, 1997), autant d'attitudes qui ont des retombées négatives sur l'efficacité de la relation d'aide et sur le succès du projet parental (Aunos et Feldman, 2002).Outre ces croyances, d'autres éléments constituent des obstacles à une intervention professionnelle adéquate avec ces personnes. La perception d'un manque de volonté à coopérer est l'un d'entre eux (Starke, 2011). Or, cette « apparence » de manque de volonté peut être expliquée par diverses raisons.…”

Mothers with Intellectual Disabilities Raising Children with Intellectual Disabilities

“…Studies have shown positive experiences of mothers with intellectual disabilities, including their considerable focus on their children's needs treated as central to self-assessment of their motherhood. Mothers with intellectual disabilities are happy, pleased and satisfied with their role, but at the same time they are able to reflect on its quality and significance of the supporting individuals [22][23][24]. Fulfilling the role of a mother strengthens the status of an adult and allows to reduce negative social implications of the "mentally disabled" label [Edmonds,in 25].…”

“…They mention the feeling of loneliness in acting as a parent, its source being their own disability [25]. Women with intellectual disabilities realize that their parental competences are subject to criticism, especially by members of their families [22,24,25,27,28].…”