Brief Report
Conceptual model for quality of life among adults with congenital or early deafness

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Abstract

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.

Section snippets

Method

Using the University of Washington Center for Disability Policy and Research's conceptual model for health promotion as a guide,8 we replicated the qualitative methods used to create domains for a new Youth Quality of Life-DHH instrument.9 The interview questions from the YQoL-DHH study were modified based on the literature that explored aspects of QoL among deaf adults and used in this study. A grounded theory approach guided the analysis of data collected from key informant interviews.10

Results

Recurrent themes and the literature conceptualize an AQoL-Deaf model (Fig. 1). This figure includes both deaf-related extrinsic and intrinsic factors that might interact with the deaf individual's health status. Along with health, these factors are proposed to have positive or negative impact on individuals' health- and deaf-related QoL.

In the AQoL-Deaf model, an emphasis in self-care (i.e., health status) should be considered in the intrinsic context that serve to promote a healthy foundation

Discussion

This study aimed to describe the factors that influence perceived QoL among deaf adults and present a conceptual framework for understanding the impact of deaf-related issues on perceived QoL. Audiological intervention such as CIs and HAs might help reduce hearing difficulties that deaf adults experience, but modifiable lifestyle factors such as self-acceptance and health advocacy that interact with the deaf adult's functional communication skills are also particularly and perhaps even more

Acknowledgment

We would like to thank Ivy Vetor, undergraduate research assistant, for her assistance with transcribing interviews and organizing data.

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Conflict of interest statement: The authors have no conflicts of interest to declare.

Grant support and presentation of work: This work has been generously supported by a seed grant awarded to Poorna Kushalnagar, PhD, from the Rochester Institute of Technology.

Results were presented at the 140th American Public Health Association (APHA) annual meeting in San Francisco, CA.

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