Holding and Professional Care: On Self-Determination for Persons With Profound Intellectual and Multiple Disabilities

Abstract

Persons with profound intellectual and multiple disabilities (PMID) are in danger of not being granted the human right to experience self-determination. Attitudes questioning the relevance of the rights of persons with significant support needs and a lack of guidance on how to practically go about ensuring self-determination might explain this. Providing knowledge about this matter, this article contributes through an ethnography highlighting the relationship between persons with PIMD and professionals. The concept of holding another’s identity was found to be a possible, fruitful approach toward self-determination in this context. Descriptions of holding dialogues with an ethics of care suggest specific conditions for moving practices toward self-determination: recognize the role of the professional, emphasize embodied empathy, and enable involvement. The ethnography suggests a broadened understanding of self-determination, pinpointing the importance of sensitivity toward the other’s particularity.

Supporting self‐determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

“…Healthcare professionals working with individuals in residential facilities placed sensitivity within quadrants focusing on thoughtful consideration of action and the individual person. That is, they emphasised careful observation and interpretation of behaviour (e.g., vocal sounds), in line with previous research (Skarsaune & Hanisch, 2023).…”

“…The second strategy identified across participants was sensitivity, aligning with previous research highlighting its importance in interactions between communication partners and people with severe or profound intellectual and multiple disabilities (Penninga et al, 2022; Skarsaune & Hanisch, 2023). However, the approaches to develop sensitivity varied between the four groups.…”

“…Decision‐making occurs in collaboration with those around us, who assist in realising our needs and wishes. Similarly, individuals with severe or profound intellectual disabilities experience self‐determination within relational contexts, where others comprehend and respect their identity (Skarsaune & Hanisch, 2023). Autonomy, within this framework, involves aligning actions with personal intentions, supported by others.…”

“…Professionals of people living in residential facilities placed communication on quadrants focusing on the organisations' vision on actions to stimulate communication based on individual needs, and as a consequence emphasised their roles to provide clients with opportunities for communication and choice making.Professionals of people living at home placed communication and choice making within quadrants focusing on acquiring knowledge about the person (e.g., what choices can the person make). For unknown reasons, these professionals mentioned aids less often, but perhaps their clients do not bring their aids during their short time stay's in the respite care facilities.The second strategy identified across participants was sensitivity, aligning with previous research highlighting its importance in interactions between communication partners and people with severe or profound intellectual and multiple disabilities(Penninga et al, 2022;Skarsaune & Hanisch, 2023). However, the approaches to develop sensitivity varied between the four groups.…”

Persons with profound and multiple learning disabilities as subjects of knowledge: Exploring the possibilities of empathy

“…The written documentation includes detailed descriptions of the relation between the person receiving services and the professional, along with a reflection log of reactions and emotions the researcher experienced during fieldwork (Finlay, 2006). The study (for more details see Skarsaune & Hanisch, 2023) was approved by the Regional Ethical Comittee in Norway (ID: 107188).…”