Development of the Concept of Death and Grief Process in Adults with Intellectual Disabilities Who Have Lost Relatives

Introduction: The aim of this study was to examine the perceptions of individuals with intellectual disabilities in adulthood about the concept of death when they lost a first-degree relative, their experiences of the grief process and their views on how they make sense of life after the loss. Method: This study was conducted with a phenomenological design, one of the qualitative research methods. Data were collected using semi-structured interviews and analyzed using descriptive analysis. Participants were determined by criterion sampling and snowball sampling strategy. The individuals participating in the study consisted of 10 adults with intellectual disabilities between the ages of 21-65. Findings: The results were grouped under 5 themes. These themes are the concept of death, news of death, emotions evoked by the word death, funeral ceremony and grave visit, grief process and experiences. The findings suggest that one participant used statements indicating a full understanding of all five components of death. However, the majority of other participants seem to understand only some of the subcomponents of death. All the participants attended the funeral and expressed that they experienced intense sadness during the grief process. Most of them reported that they moved, received psychological help and felt alone during the grief process. Discussion: The results indicate that adult individuals with intellectual disabilities understand death to some extent, although not in all its dimensions. It has been observed that the consolatory sentences formed under the influence of the prevailing culture and religious beliefs shape their understanding of death. Given this, it is necessary to implement death education for individuals with intellectual disabilities to promote a correct understanding of death.