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Based on discussions and in-depth focus groups with individuals receiving Home and Community-Based Services (HCBS), researchers at Shirley Ryan 国产色情 have identified several key nonmedical quality-of-life concepts. Supporting HCBS recipients in their desires related to these concepts helps them to live personally meaningful, self-directed lives. These concepts will guide the development of new person-centered outcome measures for HCBS. The findings from the focus groups are in Disability and Health Journal.
While existing HCBS quality measures often emphasize medical outcomes such as hospital readmissions or the provision of specific services such as transportation, this project specifically targets non-medical aspects of life that recipients themselves deem most important. These include areas where services can enhance personal well-being, autonomy, and inclusion as defined and valued by the recipient.
Through a series of discussions and structured focus groups with members of an advisory council, the research team sought to understand how HCBS recipients define quality of life and how they believe services should support their goals. Participants included people with a range of experiences and disability types, including people with physical, intellectual and developmental, mental health, and age-related disabilities, each contributing unique and valuable perspectives.
“Like any of us, we can only know the life a person wants by asking them. Measurement systems need to have a structured set of questions to get the information. Talking with the people whose lives are at stake, to learn what is most important to them, gives us the understanding we need to develop those questions,” says Sara Karon, PhD, corresponding author on the paper.
Important concepts that emerged from the focus groups include:
- Choice and control over living arrangements, how time is spent, personal relationships, financial decisions, self-expression, food and nutrition, and healthcare.
- Dignity of risk, or the right to make decisions—even those involving personal risk—without undue restriction.
- Community inclusion, emphasizing the importance of meaningful participation in community life.
“Choice and control was an important theme we heard about during these focus groups, and this is an area where we really need more quality measures to determine if HCBS is really supporting recipients in these important areas,” says Anne Deutsch, PhD, RN, a research scientist at Shirley Ryan 国产色情 and an author on the paper.
Building on these insights, the research team developed a series of survey items to measure these person-centered outcomes. These items were tested with HCBS recipients to ensure clarity, relevance, and cultural appropriateness.
The project is currently in its pilot testing phase, where the items are being evaluated for feasibility, validity and reliability. Once finalized, these items could be used to develop quality measures to help fill a critical gap in HCBS quality assessment by capturing outcomes that truly reflect recipients’ priorities, how well they are achieving their desired goals, and how well they are being supported by the HCBS system.
The development of person-centered outcome measures is just one of the projects of the Rehabilitation Research and Training Center on Home and Community-Based Services at Shirley Ryan 国产色情, Supported by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research, the RRTC is also developing a “microlesson-based” training for direct service professionals on using motivational interviewing to deliver person-centered HCBS, and identifying exceptional person-centered practices of HCBS service providers.
Niveda Tennety, Bridgette Schram, PhD, and Allen Heinemann, PhD of Shirley Ryan 国产色情, and Steven Lutzky, PhD, of HCBS Strategies, are co-authors on the paper.
This research was funded by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research to Shirley Ryan 国产色情 (grant 90RTGE0004).