Self-Determination: What can we Learn from Persons with Profound Intellectual and Multiple Disabilities?

Skarsaune, Synne Nese; Hanisch, Halvor; Gjermestad, Anita

doi:10.16993/sjdr.830

Cited by 67 publications

(51 citation statements)

References 27 publications

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“…Hence, the ethnography has supported the argument that the concept of self-determination should be broadened based on a relational understanding of life with PIMD (Stefánsdóttir et al, 2018). Arguably, it should be viewed as processes of being understood, not merely choice-making (Skarsaune et al, 2021). The ethnography has also suggested the importance of seeking for small moments where self-determination might occur, underscoring Shogren’s (2020) argument that even minor situations contribute to the enhancement of self-determination.…”

Section: Discussionmentioning

confidence: 99%

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

Skarsaune

Hanisch

2023

Research and Practice for Persons with Severe Disabilities

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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.

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Section: Discussionmentioning

confidence: 99%

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

Skarsaune

Hanisch

2023

Research and Practice for Persons with Severe Disabilities

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“…On the other hand, the figure can be used in conjunction with other tools, e.g., [47], to help relatives structure and articulate requests for assistance, such that professional support is more helpful. Furthermore, more structural awareness needs to be created among healthcare professionals that BPNs have different meanings compared to people without disabilities, and that support should always be in the best interest of the person with complex care needs, therefore requiring openness, sensitive responsiveness, dedication, and perseverance [48,49].…”

Section: Implications For Practicementioning

confidence: 99%

Satisfying Basic Psychological Needs among People with Complex Support Needs: A Self-Determination Theory-Guided Analysis of Primary Relatives’ Perspectives

et al. 2022

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Background: The fulfilment of basic psychological needs (BPNs) is seen as an integral part of human self-determination, subjective wellbeing, and overall quality of life. However, the meaning of these psychological constructs for individuals with the most extensive support needs remains elusive. Methods: Primary relatives of nine people diagnosed with severe or profound intellectual and multiple disabilities were interviewed about their perceptions of autonomy, competence, and relatedness regarding their family member with complex care needs, and about the ways in which they tried to support their family member in fulfilling specific BPNs. The interview analysis followed a grounded theory with the sensitizing concepts approach. Results: The relatives assigned important meaning to the BPNs, providing insights into their subtle nature, their implicit drivers, and how they were experienced. The relatives also identified serious challenges in detecting, clarifying, and creating opportunities for BPNs. Conclusions: The themes in the relatives’ perspectives can be summarized into a conceptual framework that may contribute to better mutual understanding between people with complex care needs, their relatives, and healthcare providers.

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“…The literature provides a rich material of the life of people with PIMD, through which different suggestions of self-determination might be given. For instance, there is a description of a young female's close interaction with a professional carer and what was understood as being met on a need to experience proximity in a stressful situation, 23 | 21…”

Section: Se Lf-deter M I Nation U N Fol De D T Hrough Eth Nogr a Phic...mentioning

confidence: 99%

Self‐determination of people with profound intellectual and multiple disabilities

Skarsaune

2022

Develop Med Child Neuro

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Self-determination is a human right that people with profound intellectual and multiple disabilities (PIMD) risk not being granted. Exploration of such topics and research in general has traditionally not included people with PIMD as sources of knowledge; rather, the perspective of others has been sought. Ethnographic methods highlighting descriptions of lived experience have been argued as a way of including such individuals, producing knowledge building on the person's perspective. Exploring the human right to be self-determined through ethnographic approaches can bring novel ways of understanding the concept, both about how to listen and learn from such experiences, and about implications for understanding self-determination. All people have the potential for self-determination, by being understood through embodied communication in caring relationships. By fostering relations with people with PIMD in sensitive, ethical ways, and addressing their profound dependency, their self-determination can be realized.How to cite this article: Skarsaune SN. Selfdetermination of people with profound intellectual and multiple disabilities.

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Self-Determination: What can we Learn from Persons with Profound Intellectual and Multiple Disabilities?

Cited by 67 publications

References 27 publications

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

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

Satisfying Basic Psychological Needs among People with Complex Support Needs: A Self-Determination Theory-Guided Analysis of Primary Relatives’ Perspectives

Self‐determination of people with profound intellectual and multiple disabilities

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