Third-party disability in aphasia: Qualitative interviews with family members linked to the ICF Meghann Grawburg1, Dr. Tami Howe1, Professor Linda Worrall2 & Dr. NerinaScarinci2 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 disabilityas a consequence of their significant other’s health condition(WHO, 2001).
Aphasia A communication disorderthat most often occurs post-stroke. Associated with impairments in spoken language, understanding, reading, and/or writing. Notassociated 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 severityof third-party 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? SOS-APHASIA
Qualitative content analysis (Graneheim & Lundman, 2004)
Research Categories 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 relationship with spouse Change in relationship with siblings Change in relationship with children Change in relationship with extended family Family is closer Family members support each other and work together Family spends more time together Less contact with extended family Change in family roles Change in relationships with friends Friends don’t understand aphasia Less in common with friends No one to talk to Unable to focus on friends Providing social contact for PWA Being a source of social contact for PWA Supporting PWA’s social activities Assisting PWA in communication Assisting PWA with expressive communication Interpreting PWA’s intended communication message Practicing communication with PWA Introducing PWA to materials, strategies and adaptations to assist with communication Actively supporting speech therapy Supporting PWA’s education Encouraging PWA’s independent communication 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 with extended family on behalf of PWA Communicating with medical professionals on behalf of PWA Communicating with the public on behalf of PWA Explaining aphasia to others Increase in housework Increase in planning meals, cooking and baking Increase in cleaning Increase in washing and ironing Doing the dishes 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 Physical, Mental, and Emotional changes Changes around the house Changes in recreational or social life Post-traumatic growth and changes Changes in communication Change in finances Relationship changes Changes in paid/volunteer work, or education
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 supportfor training, counselling, financial assistance and respite care.
Implications for the World Report on Disability A tool to measure third-party disability in aphasia. Measure theprevalenceof third-party disability Identifygoalsforinterventionwith family members Detect the need for referralto 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 disabilitiesAND 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.