The Role of Community Agency Staff in Providing End-of-Life Care for Adults with Intellectual Disability Living in Community-Based Group Homes

Background and Purpose: Adults with intellectual disabilities (ID) are some of the most vulnerable and marginalized members of our communities. Like members of the general population, adults with ID become increasingly vulnerable as they age, become chronically ill, or are at the end of life. As family caregivers’ age, adults with ID often transition from family homes into small, community-based group residences managed by agencies traditionally focused on helping them to live well. Since adults with ID acquire the same chronic conditions as members of the general population, many will become ill or die while residing in these community residences. Agency staff are expected to meet the mounting care needs for these individuals.

Providing end-of-life care is complicated because adults with ID and staff often have close relationships and may think of one another as family; however, unlike family, staff have no legal standing to make medical or care management decisions. Staff are often unprepared for the challenging role of providing end-of-life care. Social workers may interface with chronically ill or dying adults with ID and their caregivers in hospitals, community agencies, or hospices. In order for social workers to provide quality care, it is important to first understand what end-of-life care looks like in these community residences. This research contributes to the current social work knowledge base by presenting the perceptions of agency staff who cared for adults with ID who died with the aim of determining where to best target future interventions to improve care.

Methods: Grounded theory analytic methods were used to conduct a secondary data analysis exploring focus group and individual interview transcript data from 22 staff members from community-based agencies in a large metropolitan area. All transcript data were coded using Atlas-ti. The first phase, called open or initial coding, encompassed coding each sentence (4,103 codes generated) and writing memos in order to begin forming preliminary categories. The next phase, intermediate coding, explored the relationships between the categories (12 total categories).

Results: One of the main findings from this research was that staff have complicated relationships with adults with ID and their families and they perform multiple, complex roles with limited end-of-life training and support. Some staff roles included: being an advocate; providing support for both the person who was dying and their peers; working with families; and facilitating communication with health care providers. Contentious relationships with families and remembering that they were professional caregivers and not family members, made providing end-of-life care more difficult for staff.

Conclusions and Implications: Staff in community-based group homes are called upon to provide care to adults with ID with chronic illnesses or who are at the end of life. The findings of this research indicate that there are several areas where improvements are needed. Social workers in agencies or hospices may be instrumental in working with residential staff in order to provide training in aging and end of life, or to provide supports for staff who are in the midst of working with someone who is dying.