Barriers and Bridges to improved quality of life : Perceptions of People Living with Aphasia

1. Barriers and Bridges to improved quality of life : Perceptions of People Living with Aphasia Trialling the Methodology for a Research Project

2. Research Team • Associate Professor Alison Ferguson. Speech Pathology Discipline Convenor & Program Co-Ordinator Newcastle Uni. • Paula Machin. Speech Pathologist. Rankin Park Centre. • Megan Alston. Speech Pathologist. Greater Newcastle Sector Community Stroke Service. • Georgi Laney. Speech Pathologist. Rankin Park Centre.

3. The quality of life experienced by people living with chronic aphasia. • What factors contribute positively to quality of life and participation in the community. • What factors disadvantage quality of life and participation. Information About :

4. Quality of Life Measurement Tool ? • The Stroke Impact Scale • The Assessment of Quality of Life (AQoL) instrument • Dartmouth COOP Functional Assessment Charts/ WONCA • MOS SF 36 Chose Dartmouth COOP and AQoL.

6. Dartmouth COOP Functional Assessment Charts • Descriptions plus simple line drawings. • Instructed to circle the number in the box that describes you the best. • Questions • 1. Physical Fitness : During the past 2 weeks…What was the hardest physical activity you could do for at least 2 minutes? 1= Very Heavy 5 = Very light

7. 2. Feelings : During…How much have you been bothered by emotional problems such as feeling anxious, depressed, irritable or downhearted and sad? 1 = Not at all. 5 = Extremely 3. Daily Activities : During…How much difficulty have you had doing your usual activities or tasks, both inside and outside the house because of your physical and emotional health? 1 = No difficulty at all 5 = Could not do

8. 4. Social Activities : During…Has your physical and emotional health limited your social activities with family, friends, neighbours or groups? 1 = Not at all 5 = Extremely 5. Changes in Health : How would you rate your overall health now compared to 2 weeks ago? 1 = Much better 5 = Much worse 6. Overall health : During…How would you rate your health in general? 1 = Exc 5 = Poor

9. Dartmouth COOP Results Seven Subjects : most to least severe aphasia left to right.

10. The Assessment of Quality of Life (AQoL) Instrument • Permission from authors is required before use. • Five sections, three multiple choice questions in each. • Choose one of four statements in each question. • Please circle the alternative that best describes you during the last week. • Other versions available ( telephone interview).

11. 1. Illness : • Concerning my use of prescribed medicines • To what extent do I rely on medicines or a medical aid? • Do I need regular medical treatment from a doctor or other health professional? • 2. Independent Living : • Do I need any help looking after myself? • When doing household tasks • Thinking about how easily I can get around my home and community

12. 3. Social Relationships : • Because of my health, my relationships generally.. • Thinking about my relationship with other people.. • Thinking about my health and my relationship with my family… • 4. Physical Senses : • Thinking about my vision, including when using my glasses or contact lenses if needed • Thinking about my hearing, inlcuding using my hearing aid if needed • When I communicate with others

13. 6. Psychological Well-Being : • If I think about how I sleep • Thinking about how I generally feel • How much pain or discomfort do I experience?

14. AQoL Results Seven Subjects, most to least severe aphasia left to right.

15. Heart and Stroke Register • Questionnaire completed by people after their stroke. • Have also agreed to be contacted for research purposes. • Negotiated HSR support to gain anonymous consent. • Contacted if two or more years post stroke. • Three hundred mailouts completed by HSR.

16. The Mailout • Separate information for person with aphasia and carer. • Explanation, outline and request for participation. • Information on frequency of any word finding difficulties or slurred speech. • Completed Dartmouth Coop QOL. • Information whether needed assistance and how much.

17. Returns • No reply = 163 • Informed Deceased = 3 • “No Aphasia” = 15 • Refusal = 61 • Return To Sender = 36 • Agreed to Participate = 22 (7%)

18. Telephone Interviews Considered all those who indicated current communication difficulties and completed all information. Sixteen people contacted for : • Personal and medical history • History of stroke and rehabilitation • Information on social activities • Information about cognition • Willingness to participate in focus groups • Availability for focus groups.

19. Interview Results Not Collated as yet. Eight people with aphasia interested and invited to focus groups. Seven carers. One couple unable to attend on the day.

20. Two Focus Groups • Volunteer transport for two people. Others had own transport. • Charlestown Community Centre. • Focus Group 1. Four people with aphasia and three carers. • Focus Group 2. Three people with aphasia and three carers. • Afternoon tea provided.

21. AQoL administered on arrival. • Conversation about living with aphasia. • Focus group facilitator. Information and guidance for opportunity for all to talk. • Two speech pathologists took notes. • Conversation tape recorded by two recorders at opposite ends of the table. • Audiotapes to be transcribed and analysed for information and themes.

22. Aphasia Severity Rating Scale (Boston) scored by research time after focus groups. 0 = No usable speech or aud comp • 5 = Minimal discernible speech handicaps • Rating Scale Profile of Speech Characteristics (Boston) completed (not Repetition or Auditory Comprehension sections). • Three subjects = Severity 1 • One subject = Severity 3 • Two subjects = Severity 4 • One subject = Severity 5

23. Focus Group Results Initial Impressions Focus Group One • Large emphasis on health issues • Medication monitoring, toileting, and fatigue were dominant factors limiting social participation.

24. Focus Group Two • Communication harder to compensate for than physical impairments. • Desired more education about and preparation for living with stroke and aphasia in the community. • Wanted more opportunities to meet and network with other similar people. Further Results Pending.

25. Comments About Methodology • Heart and Stroke Register very valuable • Large and complicated mailout difficult for people with more severe aphasia (subject bias). • Telephone interviews informative. Able to speak to people with aphasia. Would be good if could be tape recorded. More specific comments on aphasia need including. • Focus Groups difficult to facilitate. Problem with dominant speakers. Difficult eliciting specific information desired. • Poor quality audiorecordings, needs addressing.

26. Thankyou For information please contact Paula Machin on 02 49214883.