Do they agree? How parents and professionals perceive the support provided to persons with profound intellectual and multiple disabilities

Abstract

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of Care was completed by 109 parents, and an adapted version of the Dutch Measure of Processes of Care for service providers was completed by 144 professionals. Agreements between parents and professionals were analysed using multilevel analysis. Results: In general, the parents and the professionals disagreed on occurrence and importance of both the Enabling and Partnership scale and the Respectful and Supportive Care scale. Conclusion:In order to deliver family-centred support, service providers should be aware that there are disagreements between the parents' perception of what is important in the support provided and the perception of the professional.

Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities

“…The findings of this study correspond with other studies of collaboration with parents. In a study by Jansen et al (2014), in which the ‘problem areas’ in the collaboration between parents of a child with PIMDs and professionals were described as instances where support indicated as important was not received, the highest percentages of dissatisfied parents were found on items including the provision of written information about the child (progress, treatment and changes in support) and anticipating and following up concerns. Results of studies with other participants than parents with a child with PIMDs show similar needs and desires of parents as in our study when it comes to collaboration and communication with professionals: equality, empathic and personal approach, care, interest and joint decision-making (Galil et al, 2006; Graungaard et al, 2006).…”

“…Professionals and parents can also disagree on the importance of certain family-centred behaviour, for example, trusting parents to be the “experts” of their child or helping parents feel competent. Jansen et al (2014) found disagreements on all these points between parents and professionals and, moreover, their study revealed that certain variables had significant effects on this disagreement. It appeared that the presence of sensory problems in the child, the role of the parent (father, mother or other legal representative), the type of professional (direct or indirect involvement) 2 and the number of years of experience working with the child were related to disagreements.…”

“…Previous studies have argued that in order to establish effective collaboration between parents and professionals in the support of persons with PIMDs, insight into what parents and professionals find important regarding the support provided is necessary (Jansen et al, 2013). Jansen et al (2014) found that although most parents of children with PIMDs supported by a large organization 1 were satisfied with the support provided in terms of family centredness, a substantial proportion of the 109 parents indicated that they did not always receive the support they found important (mean 34.4%), or received support that they did not find important (mean 4.8%). Topics such as the provision of written information about the child (progress, treatment and changes in support), anticipating and following up concerns, providing help in working with the support system, being aware of changing needs and being a resource for parents were the most commonly mentioned items reported by parents as important but not received.…”

“…There is little data on the collaboration between parents and professionals in the support of persons with PIMDs, particularly when the person with PIMDs lives in a group home. Jansen et al (2013, 2014) gathered quantitative data about the satisfaction of parents with the support of children with PIMDs and the opinions of parents and professionals about the occurrence and importance of family-centred behaviour. Given the complexity of the concept of collaboration and related factors (e.g.…”

The Relation Between Family Quality of Life and the Family‐Centered Approach in Families With Children With an Intellectual Disability

“…Although the current study focusses on the parental viewpoint and sheds only light on one side of the FC story (cf. Jansen, van der Putten, Post, & Vlaskamp, ; Vanderkerken et al, ), it is the first of its kind investigating the relation between FQOL and the FCA in detail. Furthermore, the use of both the EPS and the HPS and especially of their factors made it possible to compare the explanatory value of both instruments for different FQOL domains.…”