How do children/young people with severe, profound, or profound and multiple learning disabilities communicate grief? A first-hand exploration of the perspectives of children/young people, their parents and educators

General background and rationale
Until the 1990s, it was believed that people with learning disabilities were not affected by grief. However, research has shown that they do experience grief. The majority of this earlier research focused on adults with mild and moderate learning disabilities, with the needs of children/young people with severe, profound, or profound and multiple disabilities (SPMLD) being overlooked.

Aims
• To investigate how children/young people with SPMLD communicate grief.
• To explore what helps children/young people with SPMLD communicate their grief.

Methods
An inclusive and flexible methodological approach was used to gather first-hand data from four children/young people with SPMLD, which was triangulated with information gathered from adults who supported them at home and school. Findings were analysed inductively using thematic analysis and deductively, applying a framework for the process of grief communication by children/young people with SPMLD (devised as part of this study).

Results
The children/young people communicated grief in either a ‘voiced’ (verbally, vocalisations or high-tech AAC) or ‘voiceless’ (behaviour, body language, physiology, high-tech AAC and no-tech AAC) manner. Adults found ‘voiced’ communications of grief easier to hear and respond to. Failure in a child’s/young person’s communication of grief related to the adult not knowing how to respond, not having the confidence or time to respond, not wanting to deal with or having the capacity to deal with any associated behaviours the child/young person may exhibit, or they ignored the communication due to disenfranchised grief.

Conclusion and implications
Children/young people with SPMLD experience grief in relation to a range of losses and communicate grief in ‘voiced’ and ‘voiceless’ ways. Those supporting children/young people with SPMLD should be open and honest with them about their losses and follow the child’s/young person’s lead. This requires training and ongoing staff support. The newly developed framework may help adults who support grieving children/young people with SPMLD to see, hear, and respond to their communications. This study recommends changes in policies and practices to improve the understanding and support given to grieving children/young people with SPMLD.