Project Summary

This project is part of a larger program of work developed to address multiple and interrelated aspects of DSI in older persons – the Dual Sensory Impairment project (DUAL-SIP) based at the University of Sydney. The broader DUAL-SIP co-design project addresses critical gaps in care for those living with DSI (including family members), aiming to build social capacity and DSI expertise across three key domains:
1. Social awareness and inclusion: How do we build carer (informal and formal) capacity for older adults with DSI in the community? How can this be scaled and implemented to Residential Aged Care contexts in NSW, Australia?
2. Health care communication: Can the use of social haptics and/or touch messaging improve interpersonal communication, social inclusion and healthcare experiences for those living with DSI?
3. Identifying health professional competencies: What strategies are required to increase health professionals’ understanding in managing complex communication disorders in older adults?
Domain 1 of the overall DUAL-SIP project is the focus of this current project. Family carers and care networks are critical to building awareness and support for older Australians living with DSI; additionally, the role of family in the everyday life of older adults with DSI and their involvement in rehabilitation/support increases awareness, receptiveness and potential motivation of persons with DSI to participate

Project Aims

This mixed-methods project tests the concept of the Conscious Caring Model (CCM) to meet contemporary needs of older adults living with DSI, and their family carers (FC). This model has been empirically derived and developed through the doctoral research of Dr Moira Dunsmore. In this project we propose to test the efficacy of the CCM by:

1. Developing better knowledge and understanding of DSI and communication needs of family carers who provide care and support to older persons living with DSI.
2. Developing strategies through co-design for family carers to improve social participation, quality of life and reduce interpersonal tension.
3. Integrating formal and family carer networks to reduce family carer burden and provide appropriate support for older adults with DSI

This project seeks to improve the experiences, understanding and capacity of family carers of older adults living with DSI. We anticipate that the use of the Conscious Caring Model (CCM) will i) improve understanding of DSI for both the person with DSI and their family carer ii) reduce interpersonal tension at a dyad level, iii) provide communication strategies to improve social participation, and iv) facilitate integrated care networks that prioritise social health.

Project Methods

Project Methodology:  As a developing research area, understanding and including lived experience in research design and implementation is required to address the unique needs of the group. Co-design research embraces both personal and dyadic experiences shaped by their contexts and insights. While the personal experiences of DSI derive from a medical diagnosis (i.e., of vision and hearing loss), the actual experiences of DSI are often social and constructed through relational and everyday interactions. Participatory Action Research (PAR) is an appropriate methodology in this context as it aims to ‘generate knowledge for action’ and addresses issues of agency, representation and power inherent in researching ‘invisible’ population groups. There are three core concepts to PAR: codesign; non-hierarchical power relations and transformative social change for those with DSI. This project embraces this framing and provide reliable evidence of the efficacy of the CCM. We believe this model of care has capacity to scale for the broader DSI population and FC living in the community, as well as providing evidence for potential translation of this model to Residential Aged Care (RAC) nursing homes in the future.

Project Findings / expected Findings

This project will pilot a model of care to support the family carers of older Australians living with DSI in the community. Our approach invests in family carers as the bridge to social participation, access to services and improving health literacy; family carers are therefore integral to developing sustainable support strategies for older adults living with DSI.

Outputs

Selected 2024-2025

Dunsmore, ME., Schneider J, McKenzie H and Gillespie JA (2025) Exploring liminal spaces in older age: navigating the enduring state of Dual Sensory Impairment (DSI). (DOI: 10.1177/21582440241312464/ ID: SO-23-2562.R2) Sage Open

Dunsmore, ME., Watharow, A-M, and Schneider J, (2024) An invisible disability: Communication, patient safety and Dual Sensory Impairment in older persons. Journal of Advanced Nursing doi: 10.1111/jan.16159

Watharow, AM. & Dunsmore, M.  (July 2024) Dual Sensory Impairment and Older Adults: an invisible epidemic. Lived Places Publishing, New York

Dunsmore ME, Schneider J, McKenzie H and Gillespie JA (2020) The Effort of Caring: The Caregivers’ Perspective of Dual Sensory Impairment. Front. Educ. 5:572201. doi: 10.3389/feduc.2020.572201

Forthcoming:

Watharow, A., Fagan, G., & Dunsmore, M. (2025) Epistemic Gaps and Policy Absences: the plight of older people living with dual sensory impairment. In Smith-Merry, J. & Mellifont, D. (Eds.)  A Research Agenda for Lived Experience and Disability Policy. Edward Elgar Publishing.