How Do Middle-Aged Adults with Intellectual Disabilities Perceive Death Following Parental Bereavement?

Background and Purpose: Death is an inevitable part of life, yet understanding and preparing for it present unique challenges for adults with intellectual disabilities. Personal experiences, caregiving relationships, and societal values shape how individuals perceive mortality. For the aging population with intellectual disabilities, their challenges often intensify, especially following the loss of a parent—typically their primary caregiver. In South Korea, societal taboos surrounding death further complicate matters, discouraging open discussions of mortality and limiting attention to end-of-life issues. Addressing these complexities requires focused research to bridge significant gaps in understanding of their death perceptions. This study qualitatively explored how middle-aged adults with intellectual disabilities perceive death in the context of parental bereavement.

Methods: The inclusion criteria specified that participants be middle-aged adults with intellectual disabilities, aged 40 to 60, who had experienced the bereavement of one or both parents. Using purposive sampling, 21 participants meeting these criteria were recruited for semistructured in-depth interviews. The severity of disabilities varied; three had severe disabilities and 18 had moderate or mild disabilities. Most participants lived with their families at home, although five participants resided either alone or in a group home. Of the participants, 12 had experienced the loss of their father, nine had lost their mother, and five had lost both parents. The time since their primary bereavement ranged from 1 to 30 years. During the interviews, participants were encouraged to share their perceptions about death. To support comprehension and elicit reflective responses, the researchers employed carefully designed prompts tailored to the participants’ individual needs.

Results: Seven subthemes emerged under three overarching themes: (a) cognitive understanding of death (understanding the reality of death, viewing death as a transition to the afterlife, embracing the inevitability of death, emotional responses and process of acceptance); (b) perceiving death as a source of fear and sadness (approaching my death with calm acceptance, feeling safe and connected when thinking about my dead parents); and (c) living with purpose (desiring to live forever, striving to live a long life without facing mortality). Participants conveyed diverse interpretations and understandings of death. The reflective process deepened their emotional engagement with the concept and fostered acceptance of their mortality. Ultimately, they integrated these reflections into their lives, striving to live with purpose and seek meaningful and fulfilling lives.

Conclusion and Implications: This study highlighted the diverse perceptions of death among middle-aged adults with intellectual disabilities following parental bereavement. It emphasized how these perceptions, both cognitive and emotional, shaped their attitudes toward mortality and influenced their approach to daily life. Social work professionals can play a crucial role by supporting the development of cognitive understanding of death and addressing the associated emotional challenges. These insights can inform the development of culturally tailored interventions that promote open communication about death and dying while supporting acceptance of mortality in later life.