1. The Impact of Advocacy on Quality of Life for a Dyad Living with Aphasia
Kyla Dirks, M.S, CF-SLP
Communication Sciences and Disorders | Pacific University | 2043 College Way | Forest Grove | | Oregon
The participant showed declines on some reading subtests including the matching cases and scripts, free grammatical morphemes, and sentence/paragraph comprehension. No change was observed on recitation tasks, the BNT, or the following reading tasks: lexical decision, homophone matching, oral word reading, oral sentence reading, and oral sentence comprehension.
An evaluation of the overall sentiment found that of the two samples, the Interviews tended to be on average, equally positive but more neutral than the journals, however, journals were determined to be more negative on average than interviews.
ABSTRACT
METHODS (cont’d)
RESULTS (cont’d)
CONCLUSIONS
Although it is well documented that advocacy has played a major role for patients living with AIDS and Cancer (Collyar, 2005; Fintor, 1994; Redmond, 2003), it is not yet known the impact that advocacy has on quality of life (QOL) for people living with aphasia (Elman, Ogar & Elman, 2000). Because the nature of aphasia disturbs expressive and receptive language, it is difficult for people with a communication disorder to participate in advocacy. For the purpose of this study, advocacy is defined as the act of support for a person or a cause. This study investigates how advocacy for oneself, advocacy for others, and advocacy for a cause can impact the quality of life for a person with aphasia and their caregiver. Through caregiver training, environmental manipulations, and involvement in social advocacy, positive clinical outcomes were achieved and will be discussed.
advocacy commonly found in literature
about patient care and aphasia awareness
and includes self-advocacy by the patient,
advocacy on behalf of the patient by
a caregiver, and advocacy for a cause
(Anthony, 2007; Brashers, Haas,
Klingle, & Neidig, 2000; Elman, Ogar,
& Olman, 2000; Mitchell, 1997).
Following initial assessment, the PWA and the caregiver engaged in six months of intervention, which supported the three-pronged approach to advocacy. To support advocacy for self and advocacy for others interventions, the PWA and the caregiver participated in eight weeks of intervention, administered twice a week for one hour. To support advocacy for a cause interventions, the participants attended and participated in a variety of events related to aphasia throughout the six-month period.
Major Findings:
1.) On impairment level scales, the participant showed improvements with his overall severity rating, going from a 1.0 to 2.0 with increases observed on the following subtests:
2.) On QOL Scales, the individual demonstrated improved scores from pre- and post-tests on the ASHA-FACS Qualitative Dimensions of Communication assessment. There was a significant difference in the pre-intervention (M= 1.56, SD= 0.24) and post-intervention scores (M= 2.50, SD = 0.612); p=0.022.
3.) Qualitative analysis of journals and interviews was completed to identify themes. In an analysis of the journals, the most frequently used words were PWA, even, family, son, understand, much, trip, see, years, and day. In the Interviews the most frequently used words were think, just, know, like, good, really, aphasia, people, things, talk and stroke.
Using text analysis, the journals were rated 35.8% neutral, 37.6% positive, and 26.6% negative. In contrast, the interviews were rated as 42.9% neutral, 37.5% positive, and 19.6% negative.
This study examines whether a treatment effect could be demonstrated using interventions that focus on advocacy for self, others, and a cause. This study demonstrated that approaches that focused on advocacy could improve overall communication, thus positively impacting QOL and impairment level performance for a dyad living with aphasia. The current study also demonstrated improvements in speech and language ability following advocacy interventions, as evidenced by results on the BDAE-3. It is possible that these results were achieved because the intervention was functional and participation-based. Although research often focuses on individuals rather than a dyad, aphasia impacts QOL for all invested parties. Additionally, the investigation of the impact of aphasia on the dyad and on an individual with multiple impairments can help provide more information for holistic treatments for those living with aphasia.
QOL Impact in Aphasia
Advcay for Oneself
Advocacy for a Cause
Advocacy for Others
phrase length
verbal agility
melodic line
articulatory agility
grammatical form
automatized sentences
basic word discrimination
melody
rhythm
commands
number matching
complex ideational material
picture-word matching
writing tasks
nonverbal agility
LIMITATIONS AND FUTURE DIRECTIONS
MATERIALS & METHODS
VISUAL PRESENTATION OF SIX MONTH NTERVENTION SCHEDULE
The current study is a case study measuring both QOL and expressive and receptive language ability after a period of intervention focused on advocacy. The participant, AJ, was an 87-year-old Caucasian man who presented with transcortical motor aphasia, oral apraxia, and apraxia of speech following a left hemisphere stroke 7 years ago. The participant had no paralysis or hemiparesis as a result of the cerebral vascular accident and cognition was intact, however, he presented with severe word finding deficits and limited speech output immediately after his stroke. AJ received outpatient speech therapy services for three years immediately following discharge.
Most traditional methods of assessment for aphasia focus on the impairment level (Simmons-Mackie & Kagan, 2007; Cranfill & Harris Wright, 2010). Impairment-based assessments provide valuable information regarding expressive and receptive language ability, but do not measure the psychosocial impacts that the communication difficulty imparts on the person with aphasia (PWA) and caregiver (Cranfill & Harris Wright, 2010). This study focused on three components: (I) advocacy for self, (II) advocacy for others, and (III) advocacy for a cause. To determine the impact of advocacy on QOL for a dyad living with aphasia, quantitative and qualitative measures were employed, including: impairment level standardized assessments, QOL scales, free-form journals, and structured interviews.
Since advocacy encompasses multiple avenues, a three-pronged approach to intervention was used to determine how QOL was impacted by interventions focusing on advocacy for self, advocacy for others, and advocacy for a cause. The three-pronged approach is a theoretical approach that was developed based on the types of
One limitation of this study was that long term data following a period of no intervention was not collected, so the lasting effects of intervention were not observed. However, this study does demonstrate a positive benefit of life participation and advocacy treatment for a dyad living with aphasia on both impairment level abilities and perceptions about aphasia.
Future investigations should further examine the impact of advocacy on QOL for individuals and caregivers living with aphasia and to assess maintenance effects. It is also necessary for future investigations to investigate the impact that advocacy events has on increasing awareness of aphasia to the public. Given that this research is preliminary, it is necessary to replicate clinical trials to determine the impact of advocacy on QOL.
VISUAL PRESENTATION OF THEMES
SELECTED LITERATURE
Anthony, J. (2007). Self-advocacy in health care decision-making among elderly African americans. Journal of Cultural Diversity, 14(2),
Brashers, D., Haas, S., Klingle, R., Neidig, J. (2000). Collective AIDS activism and individuals’ perceived self-advocacy in physican-patient communication. Human Communication Research, 26(3),
Collyar, D. (2005). How have patient advocates in the United States benefitted research? Nature, 5,
Cranfill, T., & Wright, H. (2010). Importance of health-related quality of life for persons with aphasia, their significant others, and SLPs: Who do we ask? Aphasiology, 24 (6-8),
Elman, R., Ogar, J., Elman, S. (2000). Aphasia: Awareness, advocacy and activism. Aphasiology, 14 (5-6),
Fintor, L. (1994). Patient input blossoms from seeds of SPORE grants. Journal of the National Cancer Institute, 86, 658–660.
Mitchell, P. (1997). The impact of self-advocacy on families. Disability and Society, 12 (1),
Redmond, K. (2003). Collaboration with patient advocates: unleashing a potent force. BJU International, 91, 590.
Simmons-Mackie, N., Kagan, A. (2007). Application if the ICF in Aphasia. Seminars in Speech-Language Pathology, 28,
Journals
ACKNOWLEDGEMENTS
Thanks to Dr. Amanda Stead for her guidance and support in this project and thanks to the research subjects for participating in this study.
RESULTS
After six months of intervention, a graduate student clinician unrelated to the study reassessed expressive and receptive language using the BDAE-3 and completed the five QOL scales. The researchers then analyzed activity logs and journals for themes and sentiment using qualitative analysis. The treatment effect in this design would be demonstrated quantitatively by changes from pre-testing to and post-testing after advocacy interventions.
CONTACT INFORMATION
Principal Investigator Kyla Dirks T: E:
Interviews