Understanding the communication changes experienced by adults with cerebral palsy. Context. Context 15/07/2014. Change involves:

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1 Understanding the changes experienced by adults with cerebral palsy Dr Leigha Dark Australian Catholic University ISAAC International Conference Lisbon, Portugal 19 th 26 th July, Change involves: Elements of loss Elements of growth 2 An experience of loss or change is a normal, expected and necessary part of life (Ambler Walter & McCoyd, 2009) A lost object need not necessarily be a person. It could be a valued object, a job, an identity or status, a dream, a hope or an ideal (Bruce & Schultz, 2001; Engel, 1961) 3 1

2 Different individuals will attach different meaning and significance to loss events (Bruce & Schultz, 2001; Neimeyer, 1998). Grief and grieving encompass varied and diverse procedures for transforming and evolving meanings about the source of the loss and reorganising and adapting to a new reality (Hagman, 2001). 4 Older age has been identified as a time when multiple, gradual and cumulative losses occur Loss or change in skills, function and identity may result in feelings of grief for some people ageing with a disability 5 Adults with CP may experience changes in a range of areas including: Health and Wellness (Turk, 2009) Function, Skill and Independence (Haak, Lenski, Cooley Hidecker, Li and Paneth, 2009) Psychosocial domains (Haak et al., 2009; Horsman, Suto, Dudgeon, & Harris, 2010; Svien et al., 2008) 6 2

3 Study Design Constructivist Grounded Theory (Charmaz, 2006) 7 (Dark, 2010) 8 Communicating through loss Grieving / mourning is a process that involves the reassessment and reconstruction of meaning associated with a loss. It is a process that occurs invariably within a social and cultural context and requires both and interaction. (Neimeyer, 2001) 9 3

4 Communicating through loss Managing loss through as a loss Finding the words Interacting with others Losing skills A changing identity Accessing vocabulary and concepts Choosing how to communicate Managing partners Managing the environment (Dark, 2010) 10 Intelligibility My speech is not as good as what it I find at the moment my speech is starting to go again. I used I m to have slurring perfect speech my but words. now my tongue.. I know my tongue what is was, playing and up by more the and end I can feel of the my speech night getting deteriorating I want to say I but don t know people whether don t it is nerves or worries, forget I think it. I put just them go both on together. the computer I m just worried and about my speech get like the people. my idea day before yesterday It s easier. they did asked me three times what did I say (Sarah) I have to keep repeating myself and that is bad. As I said (Clara) I had perfect speech (Roger) 11 Sensory Changes I can read if it s a very big font VERY I get more frustrated by my hearing loss than my CP. Now I have no hearing left at all. It s been gradual but I always knew big it would font get worse. I hate I have reading a sign explaining little that font. I can t I ve hear but people always forget. Always! Hearing is invisible, that s had why. People to buy don t myself expect you a to new be able pair to get of up glasses and walk when you have CP and just are in for a wheelchair that. but they do expect you to be able to hear. It s very frustrating! (Sarah) (Sandra) 12 4

5 Cognitive Changes I feel myself going down hill it s mentally and a bit of physical combined I wanted people to write things I m out not for me remembering to help me remember what I but am I know that s supposed not the way to for do me now. or what I find I now have I need a picture you know, said those to people picture boards.not a spelling one but one with pictures (Roger) to help me remember. (Sarah) 13 The role of partners I know my speech is much worse. It used to be I always have people who know me and my much better. I admit sometimes I am lazy with speech. Because of that I have never have a my speech, but as you get older speech also problem with my. I always can changes and people have to start again with say what I need to. learning what to listen for. (Bruce) (Patrick) 14 Impact on interaction and relationships People [Patrick] can has be got very to rude get his to device us. Jack fixed! gets it I m at I find it quite curious surprising whatever word you want to the getting use that shops sometimes. to all the the stage time I can where meet and some they even people look I can t for to the me really first as understand time his helper. they seem him If I to any can have I more no tell problems them I mean that understanding I we told are him me but other people it s like, Have you got an interpreter with together. you? the other or something I mean, day to you his stop know talking being it s like is so bad they lazy really and but struggle. when talk I m properly And not then around I think because Oh, it s am if constantly, I I really can t that understand bad? Where s that him, your just makes it worse no-one because minder? you will! question yourself! (Henry) (Esther) (Clara) 15 5

6 Personal identity is the distinct personality of an individual and is concerned with the persisting entity particular to a given individual. Identity Self Concept How we understand our self Self Image How we perceive our self Self Esteem How we evaluate our self 16 Changing Identity Changing mode of I know some people find my speech hard to understand and that is frustrating. R: How do you That feel is why about I am using waiting AAC? to get a I would hate device to to see help me make go things down easier. I that don t really track want [of to Frank: use using it I all have the AAC], mixed time but feelings hate one day about it! when But it. my I speech can I have a really device does that go, I mostly I will have use something when going as out a backup. but it doesn t have One all part the feel of words me eventually doesn t on it I need. want to I it can become would use an a alphabet person help. who board uses to AAC, spell but out I know words that but it I don t will help like my using breathing that. And and then will people help me (Sarah) don t get my understand message across me when easier, I speak. especially It s very as frustrating. I get older (Pat) 17 Changing Identity Changing status as a good communicator I find that many people make assumptions about me based on what they What see. is good The combination anyway? What of is my normal? speech It s just my an spasms I am make very people careful think I with am mental my words [have an and intellectual choose interpretation It s hard to evaluate at the your end of own the speech day. Normality it s difficult is to because do what you today them disability]. like mine to carefully. do is And not and that as do good what It s makes as like you it me can want always mad! be. to It I do, am can being not forever fluctuate what on trying everyone guard through to convince the day. people It s that very and I frustrating, am one intelligent else step does. but ahead. and that that is the I can way understand it is. what So our they are saying. (Sandra) My is speech normal does and change it is good. a lot, particularly when (Jack) (Esther) I am sad or tired. (Beth) 18 6

7 Reassessment of Changes Happens in light of: How a person with CP constructs their identity as a communicator Expectations of changes in What previous experience the person has had with AAC and at what point in their life Perception of AAC in later life as a tool to enhance or as a sign of lessening ability 19 Understanding Changes Coping with loss involves two different processes: Loss oriented coping (dealing with, concentrating on and working through some aspect of the loss itself) Restoration oriented coping (reorganizing life, developing new identity, mastering new tasks) Oscillation between loss oriented and restoration oriented coping occurs (Stroebe & Schut, 1999) 20 Implication for AAC Interventions For some people with CP, considering use of AAC for the first time later in life can: Be upsetting Be threatening Be inconsistent with personal identity and self concept Be perceived both positively and negatively; and may alternate between the two perspectives 21 7

8 Identity and Participation solutions should aim to: Enhance function Enhance participation (in positive and negative life experiences) Sustain positive personal identity and self concept Promote personal wellbeing Include a process of accommodating change and supporting reassessment and reconstruction of meaning 22 References Ambler Walter, C., & McCoyd, J.L.M. (2009). Grief and Loss Across the Lifespan: A biopsychosocial perspective. New York: Springer Publishing Company. Bruce, E.J., & Schultz, C.L. (2001). Non-finite loss and grief: A psychoeducational approach. Baltimore, Maryland: Paul.H. Brookes Publishing Co. Charmaz, K. (2006) Constructing Grounded Theory: A practical guide through qualitative analysis. Sage Publications, London. Dark, Leigha & University of Sydney. Faculty of Health Sciences (2010). My life is getting smaller: the experiences of loss and grief of older adults with cerebral palsy and complex needs. Unpublished doctoral thesis. Engel, G. L. (1961). Is grief a disease? A challenge for medical research. Psychosomatic Medicine, 23, Haak, P., Lenski, M., Cooley Hidecker, M.J., Li, M., & Paneth, N. (2009). Cerebral palsy and aging. Developmental Medicine and Child Neurology, 51(Supp.4), Hagman, G. (2001). Beyond decathexis: Towards a new psychoanalytic understanding and treatment of mourning. In R.A. Neimeyer (Ed.) Meaning reconstruction and the experience of loss (pp ). Washington, DC: American Psychological Association. Neimeyer, R. (Ed). (2001). Meaning reconstruction and the experience of loss. Washington, DC: American Psychological Association. Stroebe, M., & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23, Svien, L., Berg, P., & Stephenson, C. (2008). Issues in aging with cerebral palsy. Topics in Geriatric Rehabilitation, 25,