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Perspectives on Sexuality After TBI Exploring Sexuality As an Important Part of Recovery and Improved Quality of Life

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Perspectives on Sexuality After TBI Exploring Sexuality As an Important Part of Recovery and Improved Quality of Life WINTER 2017 Volume XIV No. 1 For and about the brain injury and spinal cord injury community. Rainbow Rehabilitation Centers, Inc. RAINBOWrainbowrehab.comVISIONS Perspectives on Sexuality after TBI Exploring sexuality as an important part of recovery and improved quality of life • INSIDE TBI Model Systems Addressing Sex and Relationships in Residential Care Facilitating Sexual Expression Sexual Surrogacy Sex and Decision Making • PRESIDENT'S CORNER Dignity of Risk By Bill Buccalo, President Rainbow Rehabilitation Centers n this edition of RainbowVisions, we explore the client safe and supported? What are the biases and beliefs Iimportant issue of sexual expression for individuals who of the organization, caregivers and therapists, and how do have sustained brain injury. Sexual dysfunction following we ensure those biases do not reflect in the treatment in brain injury is a significant problem, not unlike many of a way that conflicts with the individual’s personal choice? the commonly discussed consequences such as seizure What if the person’s choice is a bad choice? Will it result in disorders, cognitive problems, depression, psychosocial, harm, or is it just a bad choice, but their choice? or physical conditions. However, clinical professionals Additionally, health care organizations are generally argue that the rehabilitation community could do a better regulated entities and must follow certain laws which job of talking about, educating, treating and supporting typically establish standards of care and protection individuals with brain injury to address their need for requirements. Guardians providing support to individuals sexual expression. have certain rules and responsibilities they must follow When reading the articles in this issue, I cannot help and judgements they must make on behalf of the person but think about the concept of “Dignity of Risk” which represented. These matters undoubtedly weigh on generally focuses on an individual’s ability to take the professionals and organizations as they work to support risks necessary to fulfill personal choice and be self- the client along their path to live the most fulfilling lives determined—even if those choices might result in failure. possible. I first heard this phrase at a brain injury conference The issue of sexual expression can certainly raise the many years ago, and it has stuck with me ever since. question of dignity of risk. The authors touch on this as It is a powerful phrase and concept, yet sometimes well as a wide variety of related topics, consideration, and challenging for clinicians and organizations to embrace. approaches. Thank you to Rainbow employees Dr. Janice Many individuals living with brain injury face enormous White, Anne Gillingham, Jenny D’Angela, and Dr. Carolyn challenges including loss of personal control, decision Scott for your contributions to this important topic. making, and forced conformance to the rules and Lastly, I would like to thank Wayne Miller. Wayne regulations of health care institutions. is one of the finest, most thoughtful, and respected As health care professionals, we must be very careful to attorneys I have ever known. He has authored the article balance the risk to the organization in providing care with on the concept of sexual surrogacy for this issue and that of the dignity of risk afforded to those we serve. This explores not only the legal considerations but a wide can be a difficult balance, but the concept of dignity of variety of limitations to individual sexual expression in risk is at the forefront of most discussions in which I am current health care models and organizations and poses involved as they relate to the organization’s approach to thought-provoking questions. Wayne, thank you for your an individual matter. What does the client want? What are outstanding contribution to this magazine, but most the roles and responsibilities of the health care providers, importantly, thank you for your support and friendship. ❚ caregivers, therapists, guardians, and other professionals in supporting a client’s personal choice? Will we keep the Exploring sexuality as an important part of recovery and improved quality of life Editor Barry Marshall Associate Editor/Designer Jill Hamilton-Krawczyk Email questions or comments to: [email protected] • IN THIS ISSUE Copyright February 2017—Rainbow Rehabilitation Centers, Inc. All rights reserved. 6 Published in the United States of America. No part of this publication may be reproduced in any manner whatsoever without written permission from Rainbow Rehabilitation Centers, Inc. Contact the editor: [email protected]. 20 Features 2 Clinical News TBI Model Systems Janice White, Ph.D., CCC-SLP, CBIST 6 Therapy Corner Facilitating Sexual Expression Anne Gillingham, OTR/l, CBIST 10 Medical Corner Addressing Sex and Relationships in Residential Care Jennifer D’Angela, MS, LLP, BCBA, CCM, CBIST 16 TBI Topics Sexual Surrogacy in TBI Rehabilitation Wayne Miller, Esq. 20 TBI Topics Sex and Decision Making Carolyn Scott, Ph.D., CBIST 22 Conferences & Events News at Rainbow 24 Southfield Center Open House | Cooking Classes | Vocational Projects New Professionals at Rainbow 800.968.6644 26 rainbowrehab.com 27 Employees of the Season Our mission is to inspire the people we serve to realize their greatest potential • CLINICAL NEWS TBI Model Systems: Educational Resources on Sexuality Following Brain Injury By Janice White, Ph.D., CCC-SLP, CBIST Rainbow Rehabilitation Centers 2 | RAINBOWVISIONS • WINTER 2017 exuality is important for most adults, and this is no different for those living with a traumatic brain injury (TBI). In fact, sexuality can be viewed as a vital component to maintaining and Simproving quality of life. As the vice president of clinical operations of a post-acute program, I have the unique role of not only bringing together a treatment team to address issues that arise regarding this topic but to also include the wants and needs of the persons we serve. Each treatment team member has a role to play when assisting individuals through the rehabilitation process. In this edition of RainbowVisions® we feature articles authored by members of the treatment team that will bring to light their approach to this personal aspect of care. As a clinician, I often rely on research available on sexuality and wanted to share a resource that I have found to be beneficial—Sexual Functioning and Satisfaction after Traumatic Brain Injury: An Education Manual.1 This manual is part of the The Traumatic Brain Injury Model Systems (TBIMS) program—a network of research that provides information and resources to individuals with TBI; their families, caregivers, and friends; health care professionals; and the general public.2 This article briefly reviews studies and information available in the manual. CHANGES IN SEXUAL FUNCTION FOLLOWING TBI Sexuality following brain injury can be affected in many different ways in both men and women. The reason for changes in sexual functioning are varied. They can be related to physical injury or cognitive changes, all of which can have an effect on personal relationships. Some of the changes in sexual function include but are not limited to: • Decreased desire for sexual activities – Following a traumatic brain injury (TBI), many people do not feel the urge for sexual activity as they may have before their injury. • Increase in desire for sexual activities – Increased desire, while not reported as frequently as decreased desire, can range from mild to extreme. Some individuals with TBI are not able to control their impulses and can be sexually inappropriate. • Decreased arousal – Decreased arousal refers to having the interest in sex, but the body not responding or functioning correctly. • Difficulty or inability to reach orgasm – Difficulty or inability to reach orgasm occurs in both men and women and may result in sexual activity not being satisfying. Issues with sexuality and sexual functioning following brain injury are common but many times not addressed for various reasons The origins for changes in sexual functioning after TBI are diverse (Fig.1, page 5). • Damage to parts of the brain – The frontal and temporal lobes are significant for sexual functioning. Damage to these parts of the brain can cause a decrease or increase in sexual desire. • Changes in brain chemistry – A TBI can significantly affect the brain’s chemistry. Too many or too few neurotransmitters—the chemicals that aid communication between different parts of the brain—can alter sexual functioning. Continued on page 4 RAINBOWREHAB.COM WINTER 2017 • RAINBOWVISIONS | 3 • CLINICAL NEWS TBI MODEL SYSTEMS Continued from page 3 • Changes in emotion and mood – Sadness, depression • Length of stays in hospital are much shorter, and irritability can lead to a loss of interest in sex and/ so there is not enough time to treat the issue or an increased desire. These changes can have an • Many are uncomfortable discussing these issues effect on the dynamics of a relationship. • Lack of knowledge on the provider’s side • Changes in cognitive abilities – Because attention, Many times rehabilitation providers do not discuss memory and thinking skills can be affected in persons sexual functioning with patients due to discomfort. with TBI, partners may find that the individual seems The level of discomfort and knowledge deficits increase like a different person, which has an impact on desire. significantly when talking with LGBTQ populations. • Physical or mental fatigue
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