Date Presented 04/01/2022
Intimate relationships are significantly associated with quality of life for young people with Down syndrome (DS). These relationships are a facet of social participation within the scope of OT practice that is not often addressed in practice. This descriptive study explores self-determination and perceptions of intimate relationships from the perspective of young adults with DS (ages 18-30 years) and their caregivers. Implications of findings for OT practice are discussed.
Primary Author and Speaker: Katherine Williams
Contributing Authors: Evguenia Popova, Katie Frank
IMPORTANCE: Intimate relationships are significantly associated with quality of life for young people with Down syndrome (DS) (Haddad et al., 2018; Friedman et al., 2018). However, individuals with DS are often left out of the conversation regarding their relationships and sexual identity (Kammes et al., 2021; Healy et al., 2009).
OBJECTIVE: To explore 1) perceptions of intimate relationships as described by individuals with DS and their caregivers, and 2)the impact of self-determination and participation in life roles on relationship formation and maintenance.
DESIGN: Prospective descriptive study utilizing a mixed-methods approach.
PARTICIPANTS: Young adults (ages 18-30) with Down syndrome and their caregivers.
MEASURES: Qualitative data were collected using interview and focus group formats. Quantitative data was collected using a background questionnaire, the Role Checklist Version 3 (RCv3), and the ARC Self Determination Scale (ARC-SDS).
PROCEDURES: Participants with DS participated in one-on-one semi-structured interviews (guided by the ARC-SDS and RCv3) and a focus group with other young adults with DS (guided by Nominal Group Technique). Caregivers completed the background questionnaire and RCv3 based on their perceptions of their loved ones’ roles. Additionally, caregivers participated in a one-on-one semi-structured interview.
RESULTS: Individuals with DS reported high self-determination on the ARC-SDS and a high level of satisfaction in their life roles on the RCv3. However, it was also noted that participants also reported strong agreeableness with others (e.g., “I usually agree with people when they tell me I cannot do something”). Individuals with DS expressed interest in developing intimate relationships and sexual identities but experienced difficulty identifying how to create and maintain these relationships. For the majority of participants, the maintenance of intimate relationships required caregiver support. Differences in how intimate relationships were perceived by young adults and their caregivers were noted. Caregivers expressed interest in supporting their adult children’s self-determination and relationship building. However, caregivers also reported some difficulty teaching their loved ones about the nuances of intimate relationships.
Friedman, C., & Rizzolo, M. C. (2018). Friendship, quality of life, and people with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 30(1), 39-54. https://doi.org/10.1007/s10882-017-9576-7
Haddad, F., Bourke, J., Wong, K., & Leonard, H. (2018). An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome. PloS one, 13(6). https://doi.org/10.1371/journal.pone.0197394
Healy, E., McGuire, B. E., Evans, D. S., & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. Journal of Intellectual Disability Research, 53(11), 905-912. https://doi.org/10.1111/j.1365 2788.2009.01203.x
Kammes, R. R., Black, R. S., & Easley, T. (2021). A Community-Engaged Project Discovering the Sexuality Questions of Adults With Intellectual and Developmental Disabilities. Inclusion, 9(1), 2-16. https://doi.org/10.1352/2326-6988-9.1.2