Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Dr. Laura Brunton

Abstract

Background: Transition from the pediatric to adult health care system is an important phase of healthcare for youth with cerebral palsy (CP). Sexuality and gender are two very important components of health that are mostly ignored in the healthcare transition process. It is possible that health care providers only see a client’s disability, and therefore, key aspects of sexuality and gender diversity may be ignored, or deemed irrelevant as a result of their disability status. Therefore, the purpose of our study is to explore how gender and sexuality may influence the experience of health care transition for youth with cerebral palsy. Method: This is a qualitative study guided by van Manen’s phenomenology of practice (van Manen, 2014). van Manen's phenomenological approach is a form of qualitative study approach which is grounded in life experiences and gives attention to the day-to-day life and it is very well suited for studying health care realities. The study population was youth with CP and Health care providers who are directly connected with the health care transitioning experience of the youth with CP. Results: Six main themes emerged from the participants narratives; 1) current state of gender identity and sexuality in CP, 2) knowledge and curiosity about gender identity & sexuality among youth with CP, 3) challenges with sexuality and gender identity, 4) societal influence and pressure, 5) sexual health support during healthcare transition, and 6) opportunities for change. Implication for practice: The findings suggest that incorporating conversations about sexuality and gender identity during health care transition is important because there is curiosity and lack of knowledge about sexuality and gender identity among youth with CP. It also suggests that increased training and education for health care providers will encourage these discussions and increase support to youth with CP.

Summary for Lay Audience

Sexuality (who someone is attracted to and their activities to express sexuality) and Gender identity (who they are) are two core elements of human personality. Transition from childhood to adulthood is the prime time when an individual develops these core elements of life. It is evident that adolescents or young adults with cerebral palsy do not receive enough education or support from the healthcare providers during their transition period regarding sexuality and gender. People with cerebral palsy may require additional education and support due to physical impairment; however, their needs are generally overlooked and they are often considered as asexual by their healthcare providers. In this situation, we understand that people with cerebral palsy who have different sexuality and gender identities may experience hardships in communicating their needs to health care providers. Our goal was to understand the experience of sexuality and gender identity formation during the healthcare transition experience among youth with cerebral palsy. Online qualitative interviews were used to gather information about the experiences of healthcare providers and youth with cerebral palsy. HCPs e.g., physiotherapists, physiatrists, occupational therapists, social workers, who had experience in the HCT process of the youth with CP were recruited for the study. Adolescents or young adults aged 14 to 25 with cerebral palsy of any gender was recruited for the study.

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