A grounded theory study of the bereavement experience for adults with developmental disabilities following the death of a parent or loved one: Perceptions of bereavement counselors

This study is a grounded theory inquiry into the experience of bereavement for adults with developmental disabilities (DD). Two research questions were asked. (1) How do bereavement counselors perceive the experience of bereavement for adults with DD? (2) What do bereavement counselors perceive as being helpful during bereavement for adults with DD? Data were analyzed from eighteen semi-structured interviews with bereavement counselors who have served adults with DD. Two major themes, Disconnection and Growth, are identified.; Disconnection is represented by the categorical concepts of Loss, Grief Response and Coping Challenges. Disconnection is described for many adults with DD. Countless unrecognized losses usually precede a current death loss. Grief responses are primarily behavioral, intense and are not always recognized as grief. Protection and dependence on caregivers limit development of coping skills. Coping often fails due to cognitive limitations and limited social support. An endless cycle of continued disenfranchised feelings about death, change, and loss may follow.