Understanding the views of children with profound and multiple learning difficulties for person-centred planning

Background

All children have the right to express their views about matters affecting them and participate in decision-making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf.

Methods

The study employs a qualitative multiple case study design involving three children with profound and multiple learning difficulties attending one special school. Social constructivist grounded theory approaches inform data gathering and analysis. Eight interviews are conducted with parents and professionals to explore how they understand the children's views and how this understanding informs person-centred planning, combined with observations of the children in school and observations of their person-centred planning meetings.

Findings

Adult participants consider the children in the study to have agency and ability to affect the world around them. They believe the children can express their likes, dislikes and what they want but they think the children would have difficulty communicating their views about their health, medical needs and disability. They describe a range of observable actions made by a child to which they give meaning when interpreting the child's views. The actions a person takes as a child's communication partner can enable the child to develop and communicate their views. A process of observation and comparison allows adults to explore different interpretations of a child's views. Perspectives offered by professionals from different fields enable a child's views to be understood in different ways.

Conclusions

Adults develop their understanding of the children's views over time in relational and social contexts. Different interpretations of a child's communication are considered when adults collaborate, leading to socially constructed understandings of a child's views. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views in the present, which informs person-centred planning.