Third-party disability in aphasia:
Qualitative interviews with family members
linked to the ICF
Meghann Grawburg1,
Dr. Tami Howe1, Professor Linda Worrall2 & Dr. Nerina Scarinci2
1 Department
of Communication Disorders, University of Canterbury, Christchurch
2 School of Health and Rehabilitation Science, The University of Queensland, Australia
What is third-party disability?
Occurs when a family member
experiences disability as a
consequence of their significant
other’s health condition (WHO, 2001).
New Zealand & Australia
Aphasia
• A communication disorder that most
often occurs post-stroke.
• Associated with impairments in
spoken language, understanding,
reading, and/or writing.
• Not associated with cognitive or
sensory impairments.
A model of third-party disability
Based on the model from:
Scarinci, Worrall, & Hickson, 2009
Overview of the project
A mixed methods study to describe
the nature and severity of thirdparty disability in aphasia.
Phase 1 - Qualitative
How are family members
affected by having a relative
with aphasia?
And how do the findings link to
the ICF?
Phase 2 - Quantitative
What is the scope and degree
of third-party disability in
aphasia?
Phase 1- Method
Qualitative
content
analysis
(Graneheim & Lundman, 2004)
together FM does not get along with PWA as well FM gets cross with PWA FM & PWA must work
at their relationship PWA is not as involved in FM’s life FM not as close to PWA Overprotective of
PWA PWA has become a priority in FM’s life Change in amount of time spent with PWA Change
in activities shared with FM and PWA Doing special things for PWA Change in physical intimacy
between FM and PWA Keeps secrets from PWA PWA and FM got married PWA and FM are
closer Talks about health with PWA
Change in relationship with parents Change in
Physical, with siblings Change in relationship with
relationship with spouse Change in relationship
Mental,family
and Family is closer Family members support
children Change in relationship with extended
Emotional
around
each other and work together Family spends
more time togetherChanges
Less contact
with extended
changes
the house
family Change Changes
in familyinroles Change in relationships
with friends Friends
don’t understand
aphasia Less recreational
in common or
with friends No one to talk to Unable to focus on friends Providing
social contact for
PWA
social
life Being a source of social contact for PWA Supporting PWA’s social
activities Assisting PWA in communication
Assisting PWA with expressive communication
Post-traumatic
Interpreting PWA’s intended communication
Practicing communication with PWA
growthmessage
and
Changes
in
Introducing PWA to materials, strategies and
adaptations to assist with
communication
Actively
changes
communication
supporting speech
therapy
Supporting PWA’s education Encouraging
PWA’s independent
Change
in
communication finances
Arranging employment for PWA Assisting PWA to communicate with medical
professionals Assisting PWA to communicate with the public
Helping PWA to understand
complex household decisions Communicating with others on behalf of PWA Speaking on behalf
of PWA Making phone calls for PWA Communicating withRelationship
extended family on behalf of PWA
Changes in
changes
Communicating with medical professionals on behalf of PWA Communicating
with the public on
paid/volunteer
behalf of PWA Explaining aphasia to others Increase in housework Increase in planning meals,
work, or
cooking and baking Increase in cleaning Increase in washing and ironing Doing the dishes
education
Making the bed Transporting PWA places Doing the household shopping Gardening and tending
plants Cleaning Feeds the animals Helping others Responsible for organizing care of PWA’s
Research Categories
Mapping to the ICF
(Cieza, et al, 2005)
Physical, mental, and emotional changes
•
•
•
•
Trouble sleeping
Weight loss/gain
Changes to their diet
Feelings of worry and
stress.
• Increased blood
pressure
Communication changes
• Difficulty communicating
• Change in content of
communication
• Communicating in a new
way
• Helping to communicate
Relationship changes
• Person with aphasia
• Family members
• Friends
Changes around the house
• More housework
• Driving the person with
aphasia places
• Changes to living
arrangements
Changes to recreational and social activities
• Less time for relaxation,
sports and hobbies
• See friends less often
• New friends
Changes in finances
• Reduced income
• More spending
Changes in paid/volunteer work or education
• Work less hours
• Quit/changed jobs
• Volunteer to help people
with aphasia
• Changed their career
path
Post-traumatic growth & changes
• Less judgmental
• Grew up more quickly
• Better able to focus on
the positive
Implications for the World
Report on Disability
Aphasia can lead to third-party disability
A significant other’s health condition can act as an
Environmental Factor that can impact upon the
functioning, disability and health of family members.
Implications for the World
Report on Disability
Provide services specifically for family members
Implications for the World
Report on Disability
Family members of people with aphasia experience
financial changes as part of third-party disability.
Most family members may need financial support for
training, counselling, financial assistance and respite care.
Implications for the World
Report on Disability
• A tool to measure third-party disability in aphasia.
•
•
•
•
Measure the prevalence of third-party disability
Identify goals for intervention with family members
Detect the need for referral to other health professionals
Provide justification for policy
Conclusion
Family members have the right to participate in
society to the fullest.
Family members provide vital assistance to people
with disabilities.
Supporting family members has a positive impact on people
with disabilities AND the family members themselves.
Thank you & questions
Acknowledgements:
Thank you to the participants
College of Science Scholarship
Funding Grant
References
Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N. Ustun, B, & Stucki, G.
(2005). ICF linking rules: An update based on lessons learned. Journal of
Rehabilitative Medicine, 37, 212-218.
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in
nursing research: concepts, procedures and measures to achieve
trustworthiness. Nurse Education Today, 24, 105-112.
Scarinci, N., Worrall, L., & Hickson, L. (2009). The ICF and third-party
disability: Its application to spouses of older people with hearing
impairment. Disability and Rehabilitation, 31(25), 2088-2100.
WHO (2001). International classification of functioning, disability and
health. Geneva: World Health Organization.