Understanding the communication changes experienced by adults with cerebral palsy

Transcription

1 Understanding the communication changes experienced by adults with cerebral palsy Dr Leigha Dark Australian Catholic University ISAAC International Conference Lisbon, Portugal 19 th 26 th July,

2 Context Change involves: Elements of loss Elements of growth 2

3 Context 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

4 Context 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

5 Context 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

6 Context 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

7 Study Design Constructivist Grounded Theory (Charmaz, 2006) 7

8 (Dark, 2010) 8

9 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 communication and interaction. (Neimeyer, 2001) 9

10 Communicating through loss Managing loss through communication Finding the words Interacting with others Losing communication skills Accessing vocabulary and concepts Choosing how to communicate Managing communication partners Managing the communication environment Communication as a loss A changing communication identity (Dark, 2010) 10

11 Communication Intelligibility Skills 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 of feel 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 like the get people. day before my yesterday idea 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

12 Communication Sensory Changes Skills 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

13 Communication Cognitive Changes Skills I feel myself going down hill it s mentally and a bit of physical combined I wanted people to write things out for me to help me remember but I know that s not the way for me now. I find now I need a picture you know, those picture boards.not a I m not remembering what I am supposed to do or what I have said to people spelling one but one with pictures (Roger) to help me remember. (Sarah) 13

14 Communication Skills The role of communication 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 communication. I always can changes and people have to start again with say what I need to. learning what to listen for. (Bruce) (Patrick) 14

15 Communication Skills Impact on interaction and relationships I People [Patrick] find it quite can has curious be got very surprising to rude get whatever his to device us. Jack word fixed! you gets want it I m at 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 can any 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 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

16 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 Self Esteem How we perceive our self How we evaluate our self 16

17 Changing Communication Identity Changing mode of communication 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 communication 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 about day it! when But it. my I can speech 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 feel the of words me eventually doesn t on it I want need. to I it can become would use an a person alphabet 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 I frustrating. get older (Pat) 17

18 Changing Communication 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 anyway? combination What of is my normal? speech It s and just my an spasms interpretation It s I am hard make very to people evaluate careful at the think your end I with am of own the mental my speech day. words [have Normality it s an difficult and intellectual is to choose because do what you today them disability]. like mine to carefully. do is And and not 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 communication are saying. (Sandra) My is speech normal does and change it is good. a lot, particularly when (Esther) (Jack) I am sad or tired. (Beth) 18

19 Reassessment of Communication Changes Happens in light of: How a person with CP constructs their identity as a communicator Expectations of changes in communication 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 communication or as a sign of lessening communication ability 19

20 Understanding Communication 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

21 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

22 Identity and Communication Participation Communication 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

23 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 communication needs. Unpublished doctoral thesis. Engel, G. L. (1961). Is grief a disease? A challenge for medical research. Psychosomatic Medicine, 23,

24 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,