Third-party disability in aphasia: Qualitative interviews with family members linked to the ICF Meghann Grawburg 1, Dr. Tami Howe 1, Professor Linda Worrall 2 & Dr. Nerina Scarinci 2 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 third- party disability in aphasia.

How are family members affected by having a relative with aphasia? And how do the findings link to the ICF? How are family members affected by having a relative with aphasia? And how do the findings link to the ICF? Phase 1 - Qualitative

SOS-APHASIA What is the scope and degree of third-party disability in aphasia? Phase 2 - Quantitative

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 PWAChange 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 PWACommunicating 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 Research Categories Changes around the house Changes in communication Relationship changes Post-traumatic growth and changes Physical, Mental, and Emotional changes Changes in recreational or social life Change in finances 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 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 Difficulty communicating Change in content of communication Communicating in a new way Helping to communicate

Relationship changes Person with aphasia Family members Friends Person with aphasia Family members Friends

Changes around the house More housework Driving the person with aphasia places Changes to living arrangements 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 Less time for relaxation, sports and hobbies See friends less often New friends

Changes in finances Reduced income More spending 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 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 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.

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 Implications for the World Report on Disability

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: Funding Grant Thank you to the participants College of Science Scholarship

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, Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 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), WHO (2001). International classification of functioning, disability and health. Geneva: World Health Organization.