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From the Editors

Expanding the Envelope of Care

Redefining the Patient as the Patient-Family Caregiver Unit

Section Editor(s): Troia, Gary A. PhD; Co-Editor; Wallace, Sarah E. PhD; Co-Editor

doi: 10.1097/TLD.0000000000000177
From the Editors
Free

The authors have indicated that they have no financial and no nonfinancial relationships to disclose.

There are only four kinds of people in this world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who need caregivers.

Rosalynn Carter (2011)

We selected this quote to highlight the universal experience of caregiving as a tie into the upcoming issue of Topics in Language Disorders. In this important and timely issue, authors provide a broad description of the experience of caregiving for individuals with acquired neurogenic communication disorders. Issue editors, Dr Catherine Off and Dr Kathryn Yorkston, developed this issue “Expanding the Envelope of Care: Redefining the Patient as the Patient-Family Caregiver Unit” and invited authors to address the wide range of caregiver experiences. The authors explore the caregiver perspective from the vantage point of various communication disorders and areas of need. Overall, the articles within this issue highlight the importance of clinicians refocusing attention on effects of communication disorders on the family–caregiver unit and family-centered interventions.

The first three articles in this issue address the experience of caregiving for individuals with aphasia. First, Off, Griffin, Murray, and Milman (2019) describe an interprofessional caregiver intervention as part of an intensive and comprehensive aphasia treatment program. The authors share information about the caregiver experience including a case example to highlight some of the important findings. Next, Grawburg, Howe, Worrall, and Scarinci (2019) describe the concept of third-party disability, as it relates to family caregivers of individuals with aphasia. Third-party disability refers to the disability experienced by family members as a result of the health condition of their loved one (World Health Organization, 2001). Grawburg and colleagues describe a tool for measuring third-party disability's effect on family caregivers and suggest potential family-centered practices clinicians can employ. Next, within their article, Stead and White (2019) address the important topic of intimacy between partners living with the effects of aphasia. The authors provide additional information about an intervention to support partners who are coping with intimacy changes after stroke and aphasia.

The issue includes three additional articles that highlight other important issues related to caregiving and other acquired neurogenic communication disorders. Mach, Baylor, Hunting Pompon, and Yorkston (2019) explore the issue of third-party disability for caregivers of individuals with Parkinson's disease by conducting in-depth interviews with family members. The important information shared by family members will help guide clinicians to address concerns and barriers faced by caregivers. Bourgeois (2019) summarizes the evidence related to interventions of caregivers of people with dementia. She makes clinical recommendations and a call to action for clinicians working with these individuals and their families. Finally, Thiessen and Beukelman (2019) describe some individual research designed to explore the learning styles and motivations of adults without experience with augmentative and alternative communication. Their purpose in examining this population is to offer insight into instructional techniques that may be most effective with new caregivers of individuals with complex communication needs.

In summary, the authors of these articles highlight some of the important issues facing caregivers. They provide guidance to clinicians addressing caregiver needs and developing interventions that consider the family unit as a whole. Although the experience of caregiving is universal in that it is lived by people from all backgrounds and life situations, an individualized approach to each family unit is necessary. The authors have provided a wealth of information to help clinicians and other professionals address the important issues related to caregiving. We would like to thank Dr Off and Dr Yorkston as well as their authors for shining a light on the many roles and responsibilities of caregivers and the professionals working with them.

As the first issue of 2019, this issue also marks some significant changes taking place at Topics in Language Disorders. As such, we are devoting some of our column to celebrating the work of Editor-in-Chief, Nickola “Nicki” Wolf Nelson. In 2005, Nicki joined Kay Butler as an Associate Editor of Topics in Language Disorders. In 2007, she became Editor and then, later, Editor-in-Chief. After many years of exemplary service carrying on the strong foundation created by Topics in Language Disorders founder and former Editor-in-Chief Kay Butler, Nicki is stepping down. We (Gary Troia and Sarah Wallace) have been serving as Associate Editors and are excited to take on the role of Co-Editors in 2019. We are indebted to Nicki and Kay as well as all of the editorial board members, issue editors, authors, and staff who have supported Topics in Language Disorders and its mission to present cutting-edge research and clinical best practices to readers worldwide who serve those at risk for or identified as having communication and related disorders.

As we look forward to future issues of Topics in Language Disorders, we are excited to continue the important work of the leaders who came before us. We are eager to hear from editorial board members and other colleagues about ideas for issues and issue editors for the journal. During our initial discussions, we have identified a few areas of focus we plan to bring to future issues. To stay current with best practices and recent shifts in educational and medical models of care, we plan to infuse even more interprofessional perspectives in the issues and articles. Thereby, we will create additional opportunities for invited authors and coauthors from other disciplines including health care and education. In addition, we hope to address many important topics from a life span perspective while acknowledging the similarities and differences in services provided to children and adults as well as their families. Finally, we will strive to honor Kay and Nicki's leadership by carrying on their core values and interests.

—Gary A. Troia, PhD

Co-Editor

—Sarah E. Wallace, PhD

Co-Editor

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REFERENCES

Bourgeois M. (2019). Caregiving for persons with dementia. Topics in Language Disorders, 39(1), 89–103.
Carter R. (2011). Family caregiving issues and the national family caregiver support program [transcript]. Retrieved from https://www.cartercenter.org/news/editorials_speeches/rosalynn-carter-committee-on-aging-testimony.html
Grawburg M., Howe T., Worrall L., Scarinci N. (2019). Family-centered care in aphasia: Assessment and rehabilitation of third-party disability in family members. Topics in Language Disorders, 39(1), 29–54.
Mach H., Baylor C., Hunting Pompon R, Yorkston K. (2019). Third-party disability in family members of people with communication disorders associated with Parkinson's disease. Topics in Language Disorders, 39(1), 71–88.
Off C. A., Griffin J. R., Murray K., Milman L. (2019). Interprofessional caregiver education, training, and wellness in the context of a cohort model for aphasia rehabilitation. Topics in Language Disorders, 39(1), 5–28.
Stead A., White J. (2019). Loss of intimacy: A cost of caregiving in aphasia. Topics in Language Disorders, 39(1), 55–70.
World Health Organization. (2001). International classification of functioning, disability and health, ICF. Geneva, Switzerland: Author.
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