WHAT PEOPLE WITH APHASIA WANT: TOWARDS PERSONCENTERED GOALSETTING IN APHASIA REHABILITATION

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WHAT PEOPLE WITH APHASIA WANT TOWARDS
PERSON-CENTERED GOAL-SETTING IN APHASIA
REHABILITATION

• Linda Worrall, Bronwyn Davidson, Deborah Hersh,
  Alison Ferguson, Tami Howe Sue Sherratt
• The University of Queensland The University of
  Newcastle
• Australia
• A NHMRC funded project 2006-2008

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Background

• Consumers of health services expect their
  concerns and priorities to form part of their
  health care.
• But, people with aphasia can have difficulty
  communicating their needs, families needs are
  frequently neglected and speech pathologists are
  often challenged to plan therapy to meet aphasic
  clients needs.

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Goals in Aphasia Project

• NHMRC funded research in Australia
• Three year research programme
• Multi-site project Brisbane, Adelaide and
  Newcastle
• Exploring goals of 50
• People with aphasia
• Family members
• Their speech pathologists

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This paper

• Presents preliminary findings on the goals of
  people with aphasia and their family
• Illustrative stories from a man with aphasia, his
  wife and their speech-language pathologist
• Presentation Outline
• Background
• Research methodology
• Initial findings

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Problems with goal-setting in aphasia

• Clients post-stroke do not generally participate
  in goal-setting (Wressle et al, 1999 Parry,
  2004)
• People with aphasia only rarely participate in
  goal-setting (Parr et al, 1997 Byng et al, 2002
  Hersh, 2003 2004)

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For family members

• Aphasia impacts on the lives of family members
  (Le Dorze Brassard, 1995 Wells, 1999)
• Calls to address family involvement in
  rehabilitation (Avent et al., 2005, Michallet et
  al., 2001, Purdy Hindenlang, 2005)
• Family centred care leads to better outcomes
  (Visser-Meily et al., 2006)
• Limited research into goals of family members
  (Monaghan et al, 2005)

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Aim of Research

• To gain the insiders perspective into
• what people with aphasia and their family want
  from aphasia services
• how speech pathology assisted people with aphasia
  with their goals of recovery

• To explore and compare the treating speech
  pathologists perception of the clients needs and
  services offered and provided

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Research Methodology

• Research advisory groups
• PWA, spouse, speech pathologist in each site
• Sampling
• Maximum variation
• Participants 50 people with aphasia at least 2
  weeks post-stroke, their family members, and
  their speech pathologists nominated by them
• 49 people with aphasia, 40 family members, and 11
  speech pathology interviews completed so far

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Research Methodology

• Method
• Semi-structured in-depth interviews
• Adapted techniques for PWA
• Videotaped with PWA
• Audiotaped family members and SLTs
• Analysis
• - Initial analysis of interviews with 15 PWA and
  15 family members qualitative content analysis

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Initial analysis
15 people with aphasia and 15 family members

• recruited through community contacts (not speech
  pathologists)
• 4 female PWA, Mean age 65 yrs, Mean 5 years post
  onset, Mean AQ 76
• All family members female

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The Interview Schedule Explored.

• Experiences of having aphasia/a family member
  with aphasia
• Goals and needs - first onset of aphasia, in
  hospital, inpatient rehabilitation, discharge
  home, outpatient rehabilitation, now
• Aphasia rehabilitation and service experiences
• Aphasia services the person with aphasia/family
  member would have wanted

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Goals of People with Aphasia

• Return to pre-stroke life Just to be normal and
  enjoy life.
• Communication No. Needs, yes, but talk my
  (points to head), I want to talk is politics and
  religion. (describing desire to express more than
  basic needs)
• Information Once youve got a name for something,
  its like youve got half the problem sorted. You
  can chase things and you can do things. You
  mightnt be able to cure it and everything else
  but you can understand it more.

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Goals of People with Aphasia (contd)

• Physical health To get the use of my hands and
  legs back.
• Social/Work/Leisure Its communication with other
  peopleum, in the sense that just to be talking
  to a neighbour.
• Control/Independence I found I spent a lot of
  time trying to help me personally like without
  the speech pathologist.
• Dignity/Respect Upstairs, very smart. Downstairs,
  crap. (pointing to his brain and his mouth)
• Altruistic and contribution to society e.g.
  Helping other people in stroke groups

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Goals of Family Members (for themselves)

• Information
• about aphasia and stroke   I sent overseas to
  America to get some books .. on, his condition,
  on stroke, aphasia
• about prognosis/recovery, about what was being
  done in speech therapy It would have made you
  aware of just what to expect and say, "Well
  right, this is what could happen" and be prepared
  for it, you know , what to expect sort of
  thing." 
• about discharge, about services/where to go for
  services, about how to communicate with the
  person I madly phoned around to see if I could
  get into some organisation that would teach me
  what to do with him

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Goals of family members (for themselves)

• Support
• from other family members of people with aphasia
• to look after themselves, ongoing availability of
  support
• Services
• counseling  I needed somebody that I could talk
  to
• service to help with financial issues

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Goals of family members (for themselves)

• Early on - to instill a sense of hope If they
  said to you, "He MAY improve.
• Space/Respite Having PWA attend speech clinic
  gave me a bit of space for myself.
• For own health needs to be addressed concern how
  person with aphasia will manage to help spouse
  with her own health conditions

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Goals of family members (for their family member
with aphasia)

• Early on
• Survival
• To have a way to communicate things such as
  emotions, basic needs to family members
• Hope for the PWA I wanted him to understand
  that... he wasn't alone, that there were people
  out there that there was and at the tunnel, a
  light at the end of the tunnel that he could see
  that you know maybe he was going to get better.

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Goals of family members (for their family member
with aphasia)

• Later
• That the person with aphasia is properly cared
  for and has a suitable place to live after
  discharge 
• That the person with aphasia is safe at home Id
  worry about him and I Id be glad to get home and
  find that hes still in one piece and sitting,
  sitting there.
• Access to services after discharge from hospital
• That the PWA is stimulated that if there were any
  other activities .. ah, Id love to know about
  them. I suppose to alleviate the boredom.
• That the PWA is independent and has access to
  counseling

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Three peoples stories
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Jim (the person with aphasia)

• In hospital
• Regaining consciousness ah taking tests
• didnt worry me at all
• (wife) had the worries
• I think they couldve told me more about the
  stroke
• Home from hospital
• They didnt tell me I couldnt lose my licence I
  didnt know any of that when I was driving
• Tying to run the business wasnt good
• I even forget some of my grandkids names
• I do the companionship a bit more the help with
  companionship
• (carpentry group) I knew a lot of the people the
  best thing I ever ever did since I had the stroke
• I like going out (to do hobby)
• And companionship go on a bus trip sometime

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Pat (his wife)

• In hospital
• I didn't know what a stroke was
• I just wanted him to know me and be able to
  co-communicate with him by any way.
• A little bit of hope that he would survive..
  would have been a good thing
• Why cant they photograph menus and the food in
  hospitals? (had fish every day in hospital and
  he wouldnt eat it at all he just pointed to the
  same thing every day on the thing)
• I was so stressed anyway that it wasnt, its
  probably they did everything they could. I
  wouldn't blame the hospital..I had a job myself
  and Jim had his business coping for about a
  month on a four hours a night sleep

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Pat (his wife)

• About speech therapy
• Speech therapist for his swallowing .. But then
  when .. She didnt give him any speech therapy.
  She just came and checked him out.
• Was a bit distressing for him.. Because um.. He,
  I dont know if he knew what a cup was or..
• Oh I suppose they seem to have a very limited
  time. They came in with their sheets and
  ..objects and go out again in whatever period
  maybe if they just sat and talked to him about it
  might have been better

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Pat (his wife)

• Hospital out-patient
• Id never ever been involved .. in seeing him
  with a therapist .. In a situation so I , I just
  assumed that that was the way it was..it would
  have helped to be able to watch what the
  therapist wanted him to do.
• You do notice a difference in the therapists when
  one was really interested in what shes doing
  Jim felt that I mean, it takes two doesnt it
• He was about four months after the stroke before
  I went to the library and got a couple of books
  to read on it
• I would have liked a copy of the reports
• (Community stroke support group 2 day conference
  ).. I learnt SO much .. All made contacts with
  each other people that was incredible

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Pat (his wife)

• Community
• I went to the university oh gee if I could have
  had something like this before ah that would
  have been beaut.it was a very positive attitude,
  the whole group was positive bring able to see
  the other people and interact with them
• We didnt know what aphasia was until we went to
  university either
• It wasnt until I hit the university that I found
  anything really positive look the university has
  saved my life, honestly

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Pat (his wife)

• Now
• But I cant keep him stimulated all the time. We
  cant keep going out all the time.
• But he still doesnt want to make phone calls,,,
  the phone, if Im out and I ring home, the phone
  will ring out, ring out, ring out and I didnt
  hear it
• (Carpentry group) to be doing something .. And
  theyd help each other.
• Reading was his LIFE, I mean, he LOVED reading.

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Speech-language Pathologist (at the university)

• He was a keen (name of hobby) and he wanted to
  return to (the name of a hobby) .. Involved a lot
  of radio work and he actually had to have a
  sort of license and to get a license he had to
  sit an exam
• The goal of completing the license is quite
  concrete and quite significant and quite large
  but there were lots of little goals really around
  it that even if you didnt achieve that big goal,
  other things could be achieved that give him the
  satisfaction at the same time I think..
• He wanted social contact with (other hobbyists)..
  
• Really quite isolated and he was quite depressed
• (wife) got a great deal of support from other
  spouses and carers and things like that.
• A lot of it was around education and information
  counseling and these sorts of things

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Speech-language Pathologist (at the university)

• Philosophy of therapy
• Its giving them the problem solving skills to
  work through the barriers or the issues that they
  are encountering.
• Also give people the confidence to take risks and
  to make mistakes and think its okay and to accept
  them and to keep going
• They actually have to take responsibility for the
  ongoing management of their situation that
  theyre in and how do you do that?.. Its much
  easier to be prescriptive its harder I think to
  step back

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Comparing the Three Stories
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Comparing the three stories
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These Stories Illustrate

• A striking dissatisfaction with hospital services
  (unmet needs)
• The spouse is able to talk about more events and
  is more dissatisfied with services
• Dissatisfaction is with
• Lack of information about stroke, aphasia and
  services
• Social isolation
• Lack of support and involvement of wife

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These Stories Illustrate

• How a community service met some of their needs
• Therapist had a strong self-management approach
  that related to the clients needs

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Conclusion

• This research is telling us what people with
  aphasia and their families want
• It is identifying many areas of unmet need
• It will help find out how needs are met (or not)
  by speech-language pathology services