Date Presented 04/04/19
Focus group interviews were used to learn about the experiences of seven direct-care providers who provide services to young adults with disabilities during the transition to adult life in the community. A focus was on the relationships formed when assisting the young adults with ADLs and IADLs required for independent adult life. The Five Cs of Compassionate Supports model emerged to describe the participants’ experiences and the relationships formed with the young adults and their families.
Primary Author and Speaker: Meira Orentlicher
Additional Authors and Speakers: Rena Fazilov, Nicole Taubman, Talya Weinstock
PURPOSE: Focus group interviews were used to learn about the experiences of direct care providers (formally known as personal care attendants) who provide services to young adults with disabilities during the transition to adult life in the community, with a focus on the relationships formed when assisting the young adults with ADL and IADL tasks required for independent adult life. Direct care providers are instrumental in supporting young adults with disabilities in independent living and community integration. They assist the young adults to perform ADLs and IADLs both at home and in community settings. Skilled providers allow for smooth, appropriate, and positive service delivery and facilitate the success of the transition process (Leutz, Warfield, Timberlake, & Chiri, 2015).
DESIGN: Four 1.5-hour focus group in-depth interviews were conducted with the participants.
METHOD: Participants were recruited from a disability service organization in a northeastern city. Seven staff members who currently provide home and community based services for at least 10 hours a week were selected. The young adults they serve transitioned from school to adult services within the past two years and were receiving services from the direct care provider for at least three months.
The focus group meetings included in-depth conversation-like interviews with open ended questions. In the 4th meeting, participants conducted participant checks and provided feedback on the analysis and findings.
The interviews were recorded and transcribed verbatim. Each transcript was coded by at least two researchers. The codes were then grouped into categories. In the process of developing themes, a theoretical model has emerged and was used to describe the findings. The model was confirmed with participants during participant check. Trustworthiness was further ensured by using audit trail, peer debriefing, triangulation, and achieving saturation.
RESULTS: The “5 C’s of compassionate supports” model emerged to describe the participants’ experiences and the relationships formed with the young adults and their families. Compassionate supports are necessary for successful direct care services. The “5 C’s” include Choice (the young adult’s choices are at the forefront of all decisions about day-to-day activities), Creativity & Flexibility (providers must utilize creativity to personalize activities to meet the young adult’s needs and flexibility is required to accommodate ever-changing schedules, interests, and needs), Communication (required for positive and successful relationships), Commitment (providers are committed to their jobs, the families and the individuals they support and often place the individual’s needs before their own), and Compensation (providers are not adequately compensated for the services they provide. If given adequate compensation, higher quality of care can be provided with lower turnover rates).
CONCLUSION: When there is a balance between the “5 C’s”, successful compassionate supports are evident. Positive relationships with direct care providers facilitate the young adults’ participation in occupations and daily activities (Buys, Aird, & Miller, 2012). Occupational therapy practitioners can facilitate positive direct care relationships by educating providers on strategies to better support the young adult in ADLs and IADLs as well as by suggesting techniques to incorporate the 5 C’s into their daily practice. A limitation of the study is that not all seven staff members participated in all four group interviews. This study directly contributes to AOTA’s research priority “Development and Transitions for Individuals and Families” as it explored optimal ways for supporting young adults during the transition to independent life in the community.
References
Leutz, W., Warfield, M. E., Timberlake, M., & Chiri, G. (2015). Infrastructure of participant direction for medicaid-funded in-home autism services for children in Massachusetts. Journal of Policy and Practice in Intellectual Disabilities, 12(1), 27-36. doi:10.1111/jppi.12103
Buys, L., Aird, R., & Miller, E. (2012). Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities. Journal Of Intellectual Disability Research, 56(12), 1133-1147. doi:10.1111/j.1365-2788.2011.01500.x
