A Photovoice Study: Experiences of Middle-Aged Adults with Intellectual Disabilities in Korea

Background and Purpose: The life expectancy of people with intellectual disabilities (ID)—although still lower than the general population—is on the rise. Among people with disabilities, the aging population with ID is a significant and growing subgroup. Enhancing their quality of life is an important concern. As people with ID approach older adulthood, they face unique physical and psychosocial challenges. Although studies of this population have explored informants’ perspectives, including service providers or family members, scholars have not adequately examined the experiences of middle-aged adults with ID from their point of view. This study addressed this research gap by exploring the lived experiences and concerns of middle-aged adults with ID living in their community, from their perspectives, using innovative participatory action research.

Methods: We recruited a purposeful sample of six middle-aged adults with ID between ages 39 and 64 from two community welfare centers in Gyeonggi, Korea. We conducted six photovoice sessions between November and December 2017. The initial session involved orientation and group discussion for theme selection, the second to fifth sessions involved photo taking and group discussion of photo stories, and the final session involved sharing photovoice outcomes and discussing experiences and feelings. Sessions lasted 2 hours and were held at the participants’ daycare center. Participants were instructed to submit two or more photos of the participant-selected theme for each session. In the group discussion, each participant shared stories behind their photos, and related experiences were discussed among other participants. We used thematic analysis to identify patterns or themes of the qualitative data from group discussions.

Findings: Five major themes and 11 subthemes emerged: health (worry about health problems, attempts to be healthy), free time (loneliness and boredom at home, desire to have friends), time in the center (diverse activities, connections with others), family (appreciating my family living with me, missing deceased family), and the future (worry about aging, feeling death is near, not wanting to leave the center). All participants attempted to improve their health, but they described frustration and lack of control and autonomy in making healthy choices. Some participants said they spend much time alone, although the center provides them with important activities and interactions. They expressed appreciation toward their family members for living together and a feeling of grief toward their deceased family members. As they considered aging, participants said they felt anxious about reaching the age limit for participation in the center and death approaching.

Conclusion and Implications: Our findings suggest that investigating later-life challenges and developing appropriate community support systems is an important part of promoting well-being of aging adults with ID in South Korea. Practitioners must provide individualized education to those with ID to improve their understanding of healthy practices and appropriate services to enjoy later life. Most importantly, recognizing and understanding complex issues they may face in later life can inform the development of relevant interventions that assist with their psychosocial adjustment to older life.