Conceptual model of quality of life in adults with congenital and early deafness

Background

A conceptual model of health-related quality of life (QoL) is needed to describe key themes that impact perceived QoL in adults with congenital or early deafness.

Objective

To revise University of Washington Center for Disability Policy and Research’s conceptual model of health promotion and QoL, with suggestions for applying the model to improving programs or services that target deaf adults with early deafness.

Methods

Purposive and theoretical sampling of 35 adults who were born or became deaf early was planned in a 1-year study. In-depth semi-structured interviews probed deaf adult participants’ perceptions about quality of life as a deaf individual. Data saturation was reached at the 17th interview with 2 additional interviews for validation, resulting in a total sample of 19 deaf adults. Coding and thematic analysis were conducted to develop the conceptual model.

Results

Our conceptual model delineates the relationships between health status (self-acceptance, coping with limitations), intrinsic (functional communication skills, navigating barriers/self-advocacy, resilience) and extrinsic (acceptance by others, access to information, educating others) factors in their influence on deaf adult quality of life outcomes at home, college, work, and in the community.

Conclusions

Findings demonstrate the need for the programs and services to consider not only factors intrinsic to the deaf individual but also extrinsic factors in enhancing perceived quality of life outcomes among people with a range of functional hearing and language preferences, including American Sign Language.