Using Photovoice to Explore Quality of Life Factors of Adults With Crouzon Syndrome

Abstract

In the United States, one in 60,000 adults live with Crouzon Syndrome (CS) and facial malformations. Phenomenological studies about their lived experiences and quality of life are lacking. The purpose of this participatory action research study was to gain a richer understanding of the perceived biopsychosocial and socioecological factors that impact quality of life for adults living with CS using Photovoice. Another aim was to develop a conceptual framework of quality of life for those experiencing CS to enhance tailored health education and services. A purposeful sample of nine adults with CS were recruited from U.S. national surgery centers and support groups. Participants used photography to represent their experiences and participated in individual interviews and focus groups. Data were analyzed with the participants using thematic analysis, and 44 themes emerged which informed the development of a quality of life conceptual framework and action plan described in this article.

Is a Picture Worth a Thousand Words? Using Photo-Elicitation to Study Body Image in Middle-to-Older Age Women With and Without Multiple Sclerosis

“…The total data set used for analysis included seven interviews which ranged from 44 to 110 minutes with a total of 70 accompanying photographs. We deemed this to be sufficient data for our purpose as it provided a rich analysis with which to answer our research question (Braun & Clarke, 2019) and is consistent with similarly conducted studies (e.g., Fleury et al, 2009;Kantrowitz-Gordon & Vandermause, 2016;Watchman et al, 2020;Wheeler & Early, 2018). Analysis was conducted inductively, both independently and collectively through weekly meetings and discussions.…”

“…Photovoice has three main goals: (a) to enable people to record and reflect community needs, (b) promote critical dialogue and disseminate knowledge about important issues through discussion of photographs, and (c) to ultimately reach policymakers to address these needs. This powerful methodology has been taken up to help understand and address the needs of people with intellectual disability (e.g., Watchman et al, 2020 ) and Crouzon syndrome (e.g., Wheeler & Early, 2018 ). In Payne et al’s (2016) photovoice study with young disabled women, participant-produced photographs were useful for demonstrating the daily interactions people with disability encounter.…”

What about Using Photovoice for Health and Safety?

“…In such projects, neither empowerment nor social action steps are planned beforehand, since the study outcome cannot be sufficiently predicted. Examples of this are finding a cultural identity [20], obtaining insight in the lifeworld of a specific group [153][154][155][156][157][158][159] or gaining understanding about, e.g., health, food and sports, abuse or drugs related behaviour within a group [16,49,110,112,[117][118][119][120][121][160][161][162][163][164][165][166][167][168][169][170][171]. Health and safety risk assessment can be assisted by using this generic photovoice design for exploration, e.g., of a work environment such as in mining, construction, waste handling, etc., occupational hazards in a workplace, social factors, a neighbourhood, or challenges experienced by foreign workers [24,25,85,99,101,102].…”

Qualitative research: An overview of emerging approaches for data collection

“…14,15 Photovoice is currently used in a wide range of geographical and social contexts, including, but not limited to, health education, 16 user participation 17 and disability studies. 18 This approach is highly flexible and can be modified to address a range of issues. Wang and Burris first used Photovoice to improve women's health in rural China by exploring the daily lives of these women.…”

“…14,15 Photovoice is currently used in a wide range of geographical and social contexts, including, but not limited to, health education, 16 user participation 17 and disability studies. 18…”