Based on a survey that was carried out by Puzzle SE
This research is part of the project “The Management of Mourning by Adults with Mental Retardation. Creation of educational material and educational activities for individuals, families and professionals “.
- Describe to us how you handled a grief and how the person with mental retardation experienced it
- Parents – Life cycle preparation / training, preparation for a specific impending death when possible, a lot of discussion slowly explaining the fact (without unnecessary details) to understand it and the possible consequences / changes that the loss brings in the life of the individual, concealment of an event until the parent has managed his own mourning, support from the educational context of the individual. He experienced it like all people. It was hard to understand that his father had died – he was still looking for him. He was not given all the answers and the fact is still being processed.
Intense reflection on how to prepare the person how the parents will grow up and leave life and how the person will be left alone – what will happen next – insecurity of the person for his future.
- Professionals – Discussing the fact with the person using simple expressions (or material for non-verbal expression) and helping him to process and understand it, giving him space and time to express his feelings, communication with the family. Expected process of mourning with emotional fluctuations.
The results of the questionnaire confirm how common it is now for PWID to experience some loss / grief (34 out of 46). Also, that most parents do not feel prepared to manage their child’s grief (21 out of 34) and that they have not received any education (32 out of 34). On the contrary, the professionals having received some training (9 out of 12) felt prepared to manage the mourning of the PWID(9 out of 12). Most participants did not receive any support in mourning management (38 out of 46).
Both parents and professionals express a desire to participate in some education (38 out of 46), perhaps because most (39 out of 46) believe that PWID find it difficult to manage mourning and that they manage it differently from normal development. population (34 out of 46). They recognize that PWID can understand death (39 out of 46) and do not shy away from discussing it (38 out of 46). Finally, we see that mainly parents tend to filter the information to protect the person (18 out of 34) while professionals mainly explain to the person without hiding information (10 out of 12).
An important observation that emerges from the parents’ answers is the intense reflection and concern on how to explain to their child that at some point they will leave life and the child will be left alone.
According to the literature and the empirical study, people with mental retardation can understand the meaning of death and mourn. Also, the majority of PWID (if not all) will experience significant losses during their lifetime. Therefore people need to be able to provide them with the appropriate support in managing grief.
Of great importance is the preparation and education of the person with mental retardation around the cycle of life and death. Also, the preparation and the information should be done in a simple and understandable way, to give the possibility of expressing thoughts and feelings (with verbal or non-verbal communication), the possibility of choosing the degree of involvement that will have in the rituals, the understanding of the reactions etc. .
There is a great need and interest from families and professionals to better understand how mentally retarded people manage mourning so that they can provide them with the right support. In Greece, there is no such training so far – especially for the management of the mourning of people with mental retardation. Therefore, the educational material and the educational activities that will be implemented through this project will meet a great need of AMNY, its families and professionals in the field.