Intergenerational Volunteering Experiences for Individuals with Aphasia
Theresa Jingyun Yao, M.Ed., M.S., CF-SLP
Department of Speech, Language, and Hearing Sciences, California State University, East Bay

Introduction
The Aphasia Access White Paper (Simmons-Mackie, 2017) reports that more than 2.5 million individuals in the United States are living with aphasia. Individuals with aphasia (IwA) often experience social isolation and decreased confidence in communication (Vickers, 2010; Babbit & Cherney, 2010). Despite having personal and social needs to re-engage in the community, aphasia may create barriers to being involved in meaningful social activities and relationships (Davidson et al., 2008). IwA are often viewed through the lens of disability, thus seen primarily as recipients of services which may limit a sense of personal agency and social equality. Opportunities to function in the role of
“expert” such as a volunteer are rarely available to them (Avent, 2009; Purves, 2013). Since social reintegration is a major life goal for many IwA, being involved in providing community service to others may help improve self-esteem, boost confidence, and increase a sense of personal value (Bhogal et al., 2003). Although there are growing numbers of aphasia centers and community programs for IwA based on the principle of promoting life participation, many focus on service provision to IwA and their caregivers. Community volunteering opportunities are still limited for IwA.
About ATP
The Aphasia Treatment Program (ATP) is a clinical treatment program established in 1997. ATP has been serving people with aphasia and providing treatment sessions and different activities for them for 20 years. ATP members come from different areas in the East Bay. Majority of them are elderly stroke survivors with language impairments. ATP was founded on the principles of the Life Participation Approach for Aphasia. This approach places the life concerns of people with aphasia at the heart of clinical decision-making, and prioritizes the meaningful participation of people with aphasia in society.

About Hayward Community
Hayward was one of the first five cities in the nation to receive the federal Promise Neighborhood (PN) grant started in 2010. The goal of the PN grant is to improve the educational and developmental outcomes of children and youth in the most distressed communities, and to transform those communities. Hayward Promise Neighborhood (HPN) serves residents within the Jackson Triangle community of Hayward. 46% of residents are Spanish speakers, while 37% primary language is English. 17.4% of Jackson Triangle residents are living below the poverty level. Many school age students in Hayward Unified School District experience challenges in reading and literacy development. They need services and interventions help to develop their reading, literacy and social skills that are the foundation for future learning. HPN has provided some reading and literacy development programs, but they didn’t have enough volunteers and assistants to help and interact directly with the students in these programs.

Objectives
This program’s goals were:
1) To increase the life participation for people with aphasia.
2) To investigate the impact, barriers, and facilitating factors related to community volunteering on people with aphasia.
3) To support reading and literacy development of school age children in underserved community.
4) To increase the awareness of aphasia and relevant communicative disorders in local community.
5) To increase students’ understanding of helping people with disabilities in our society.

Methods
In this project, I partnered with the Aphasia Treatment Program
(ATP) and a Hayward Promise Neighborhood (HPN) sponsored summer reading program, Words for Lunch. This project included volunteer placement in a 2-hour twice weekly (10 sessions in total) summer volunteering program in the local community. 4 individuals with aphasia and 4 family/friends of them were recruited as volunteer readers, puppeteers, and helpers to assist the reading circles with preschool/school-aged children. Aphasia-friendly volunteer training was provided before the program started that reviewed volunteer rules, program logistics and puppeteering skills.
Mixed methods of measurements were used to examine the impact and experience of community volunteering for participants with aphasia, including pre/post questionnaires, interviews (conducted after completion of the program), and field observation. 3 pre/post questionnaires and 2 program evaluation surveys were collected and analyzed including:

• Aphasia Impact Questionnaire (AIQ-21)
• Communication Confidence Rating Scale for Aphasia
(CCRSA)
• Personal Report of Communication Apprehension (PRCA-24)
• Program specific survey (Intake/Post)

The program specific survey was developed using a 100 point visual scale to address the volunteer skills and experiences directly tied to the Words for Lunch program. The first part looked at confidence and the second looked at other salient aspects of the volunteer experience.

Two volunteers with aphasia agreed to participate in the pre/post questionnaires and surveys. Results were as follows:

1) Decreased AIQ scores for both participants, suggesting improved overall quality of life/less impact of aphasia (*Figure 1: single item score from 0-4: 4=bad, 0=good; total 21 items).
2) Increased CCRSA scores for both participants, suggesting improved communication confidence after participating in the volunteer program. (* Figure 2: single item scores from 0-100: 0=not confident, 100=very confident; total 10 items)
3) Decreased PPCA-24 scores for one participant (Pt 1), suggesting reduced communication apprehension after participating in the volunteer program. Another participant (Pt
2) remained relatively stable. (*Figure 3: subsection scores range from 6-30; total score ranges from 24 - 120; Higher scores indicate higher level of apprehension; total 24 items).
4) Program specific survey may suggest participants increased confidence in some areas including communication skills as a volunteer, meeting new people, communicating with children, and learning new skills (*Figure 4).

Conclusions
Results from the questionnaires and surveys suggested intergenerational volunteering in community program may positively impact quality of life for individuals with aphasia. Field observation suggested increased the awareness of aphasia in local community, particularly with local volunteers, children and parents in the reading program. Children in the reading program were observed to establish friendship with volunteers with aphasia, ask questions about communication disorders, and help volunteers with aphasia in word finding and other situations with communication breakdowns. From the post program interview, volunteers with aphasia and their family/friends expressed that the volunteer program provided a meaningful learning experience for both generations, and created an encouraging environment for both populations to help each other and learn from each other.

References
• Avent, J., Patterson, J., Lu, A., & Small, K. (2009). Reciprocal scaffolding treatment: A person with aphasia as clinical teacher. Aphasiology, 23(1), 110-119.
• Bhogal, S. K., Teasell, R. W., Foley, N. C., & Speechley, M. R. (2003). Community reintegration after stroke. Topics in Stroke Rehabilitation, 10(2),
107- 129.
• Davidson, B., Howe, T., Worrall, L., Hickson, L., & Togher, L. (2008). Social participation for older people with aphasia: The impact of communication disability on friendships. Topics in Stroke Rehabilitation, 15(4), 325-340.
• Purves, B. A., Petersen, J., & Puurveen, G. (2013). An aphasia mentoring program: Perspectives of speech-language pathology students and of mentors with aphasia. American Journal of Speech-language Pathology, 22(2), S370-S379.
• Simmons-Mackie, N. (2018). The State of Aphasia in North America: A White Paper. Moorestown, NJ: Aphasia Access.
• Vickers, C. P. (2010). Social networks after the onset of aphasia: The impact of aphasia group attendance. Aphasiology, 24(6-8), 902-913.
• Aphasia Treatment Program http://www.csueastbay.edu/slhs/clinic/atp.html
• Hayward Promise Neighborhood http://www.haywardpromise.org

Acknowledgements:
Bay Area Albert Schweitzer Fellowship
Aphasia Treatment Program, CSUEB
Hayward Promise Neighborhood/Words for Lunch
Department of Speech, Language, and Hearing Sciences, CSUEB
Correspondence about this research may be sent to:
Theresa Jingyun Yao Email: theresa921@hotmail.com