Intimacy and Sexuality After Stroke: Spouse Perspectives

PURPOSE AND BACKGROUND: The purpose of this study was to understand sexuality and intimacy concerns of spouses or partners of people with stroke. Stroke is a leading cause of disability with diverse effects on everyday life for survivors and their families. Sexual activity is identified in the Occupational Therapy Practice Framework: Domain and Process (American Occupational Therapy Association, 2014) as an activity of daily living. Role changes and relationship issues can be challenging for stroke survivors and their partners.

Sexuality and intimacy affect social participation, but research shows that this topic is seldom addressed by clinicians working with couples affected by stroke. Although a few studies have explored this topic, few have included spousal caregivers. Concerns of caregiver partners or spouses must be recognized to develop resources that can promote sexual health and quality of life for couples after stroke.

METHOD: For this qualitative, descriptive design study, adults (age 20+) whose partner or spouse had had a mild or moderate stroke were recruited by phone from a stroke registry. Semistructured interviews were done in person or by phone. Demographic questions included length of relationship, marital status, age, gender, and race or ethnicity. The interview explored past and current social activities, satisfaction with current intimacy and sexuality, challenges, sources of information and support (including health professionals), and recommendations. After carefully reading and rereading interview transcripts, study team members individually coded the interviews, then compared their coding to discuss and resolve any differences. On the basis of the coding, they identified themes and subthemes.

RESULTS: Seven women and two men participated in this study. Three main themes were identified: (1) maintaining intimacy in new ways, (2) redefining sexuality and exploring options, and (3) grappling with information gaps. Some participants reported that despite difficulties, several positive changes had occurred in the relationship and for themselves. None of the participants received any information from health professionals regarding intimacy and sexuality after stroke. They reported distress about the lack of information about this topic. Participants recommended that health professionals address this topic, provide information, and refer people to support groups for peer exchange of information and support.

CONCLUSION AND IMPACT STATEMENT: Intimacy and sexuality can make a major contribution to quality of life for stroke survivors and caregivers. This arena is neglected by health professionals. Spouses feel neglected and troubled by their relationship changes and do not know where to find information and support. Results of this pilot study have implications for education, clinical practice, resource development, and further research. Findings from this pilot study, combined with further research including a larger and more diverse sample, can guide clinical protocols and development of community resources to support positive relationships for couples after stroke.

References

American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1–S48. https://doi.org/10.5014/ajot.2014.682006

Kitzmuller, G., & Ervik, B. (2015). Female spouses’ perceptions of the sexual relationship with stroke-affected partners. Sexuality and Disability, 33, 499–512. https://doi.org/10.1007/s11195-015-9404-x

Rosenbaum, T., Vadas, D., & Kalichman, L. (2014). Sexual function in post-stroke patients: Considerations for rehabilitation. Journal of Sex Medicine, 11, 15–21. https://doi.org/10.1111/jsm.12343

Seymour, L., & Wolf, T. (2014). Participation changes in sexual functioning after mild stroke. OTJR: Occupation, Participation and Health, 34, 72–80. https://doi.org/10.3928/15394492-20131217-01