Meaning and experiences of participation: a phenomenological study with persons with deafblindness in India

Abstract

Purpose: Deafblindness, also known as dual sensory loss, creates a distinct condition more disabling than either deafness or blindness alone. The participation experiences of persons with deafblindness have not been understood well. This phenomenological study aims to understand the meanings of participation for persons with deafblindness and identify the domains of life that are important to them.

Methods: We used the International Classification of Functioning, Disability and Health as a guiding framework. Sixteen adults with deafblindness were interviewed between March and May 2017 in India using a qualitative interview guide.

Results: Findings suggest participation as a dynamic, individualized construct that is not just an end outcome. Rather, it is a means to achieve other goals important to the participants such as gaining respect, autonomy, independence, support and relationships, to fulfill aspirations and responsibilities, and to feel included and recognized in society. Life domains that they deemed important for participation were communication and access to information, mobility, relationships, education and productivity, and recreation and leisure.

Conclusions: In order to enhance societal participation of people with deafblindness, a significant change in the focus of rehabilitation services is required which involves professionals viewing participation as both a means and an end outcome while designing interventions.

Keywords:

• Participation
• experiences
• deafblindness
• dual sensory loss
• ICF
• phenomenology
• qualitative research
• developing nations

Acknowledgements

The authors would like to acknowledge the Queen Elizabeth II Diamond Jubilee Scholarship to the first author (AJ) for his doctoral study. The authors would like to thank two research partners – Sense International India and Deafblind Ontario Services for their support throughout the study. The authors appreciate the unconditional support provided by Mr. A. Paul (director of Sense India) and the program team staff for recruitment and data collection. The authors would also like to thank Ms. S. Gupta for her support in the project as a research assistant. We would also like to convey our special thanks to all the participants and their family members, without whom this study would not have been possible.

Disclosure statement

Dr. Marcia Finlayson serves as the editorial board member of this journal. Other authors declare no conflict of interest.