The Lived Experiences of Providing Informal Care to Adults of the Opposite Gender at End of Life

Despite the prevalence of opposite-gender informal caregiving at end-of-life there is a paucity of research into this topic. Opposite-gender caregiving is a significant yet underexplored aspect of caregiving dynamics. Many studies show that gender differences impact the caregiving role and how it is experienced (Feld et al., 2010). Occupational therapy interventions improve physical and mental functioning, translating into an enhanced quality of life for care recipients and are uniquely skilled to address this issue (Fields et al., 2021). The purpose of this study is to understand the experience of these caregivers, advance knowledge, and help inform future occupational therapy practice. This qualitative phenomenological study utilized semi-structured interviewing techniques to explore informal end-of-life opposite-gender care experiences of eight caregivers. The interview transcripts were analyzed using the In Vivo, emotional, and thematic coding. The study revealed that EOL caregiving tasks, especially those crossing gender boundaries, posed unique challenges in maintaining dignity and modesty, impacting caregivers and care recipients. The caregiver’s gender was shown to significantly influence caregiving roles, routines, and experiences. Four main themes and six subthemes were identified. These themes were role conflict, with subthemes gender expectations, impact on other roles, and impact on communication; routine, with subthemes time demands, gender demands, and establishing routines; dignity; and modesty. Findings demonstrate the intricate dynamics of opposite-gender caregiving at the EOL, highlighting the need for a nuanced understanding and approach in caregiving support. Occupational therapists can use their unique knowledge and expertise to play a pivotal role in addressing the needs of these caregivers.

References

Feld, S., Dunkle, R. E., Schroepfer, T., & Shen, H. (2010). Does gender moderate factors associated with whether spouses are the sole providers of IADL care to their partners? Reseaerch on Aging, 32(4): 499–526. https://doi.org/10.1177/0164027510361461

Fields, B., Rodakowski, J., Jewell, V. D., Arthanat, S., Park, M., Piersol, C. V., Schepens Niemiec, S. L., Womack, J., & Mroz, T. M. (2021). Unpaid caregiving and aging in place in the United States: Advancing the value of occupational therapy. American Journal of Occupational Therapy, 75, 7505347010. https://doi.org/10.5014/ajot.2021.044735