Direct support professionals' perceptions of service users' grief process

As individuals with intellectual and developmental disabilities live longer lives, there is greater likelihood that they will confront the death of staff, family members, and friends, as well as other losses in adulthood. Staff can play a significant role in assisting such service users through the grief process, though limited best practice examples are available. In many cases, service users do not receive adequate information about death, and may not possess needed resources to navigate the grief process. In response to a lack of information on service users' experience with loss, we examined staff perceptions of the service user grief process and what is needed for optimal support. Nine focus groups from five community-based agencies were conducted with 60 direct support professionals (DSPs) on topics related to their perceptions of service user grief and coping. The data were analyzed with dimensional analysis. DSPs perceived the service user grief process as being influenced by a range of factors, including service user cognitive ability, organization-wide information provision, and family involvement. Some service users do not differentiate between types of loss. Recommendations to assist service users included activities such as goal setting and relaxation programming. Study results provide further insight into how staff can support service users experiencing grief. Future research directions include use of this analysis to develop a best practice model incorporating organizational policy, service user grief assessment, and service user coping assistance.