Promoting Personhood in Adult Treatment

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Promoting Personhood in Adult Treatment

• Aphasia Challenges
• Barbara B. Shadden
• ASHA CONVENTION, 2007

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(No Transcript)
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Personhood across communication disorders

• Examples
• ALS
• PD
• Aphasia
• Dementia
• Differ in
• Domain disrupted (cognitive, linguistic, speech)
• Temporal characteristics (onset, progression,
  recovery, endpoint)
• Degree to which others continue to see/affirm
  selfhood

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Those touched by aphasia

• struggle against dominant discourses of
  previous identities to co-construct different
  way of speaking about selves and to develop new
  forms of action (Penuel Wertsch)
• We all feel the need for a sense of invigorating
  continuity and sameness with respect to our
  perceptions of self (Erikson)

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How does aphasia differ from AD?

• Onset characteristics
• Recovery vs. degenerative progression
• Communication system most affected
• Others perception of self in each disorder
• Others understanding of what to expect

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Important themes theory

• Social construction of identity who and what
• Recognition
• Construction and reconstruction
• Embracement
• Voice/voiceless
• Communication and discourse are fundamental, and
  narrative frames the identity process

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Identities shaped by discourses within society

• Defines normal, deviant, marginal
• Ideally allows development of modified identities
• Evolving identities relatively fragile at first

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Misrecognition, rejection, non-recognition

• Internalizing identity as inferior or
  incompetent

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continued

• Narrative lives as storied (Frank, Brody,
  Heinemann)
• Biographical work
• Biographical particulars
• Self-determined
• Illness narrative
• General narratives
• Life stories
• Meaning making, sense making

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continued

• Temporality/timelines
• Idea of continuity and/or disruption
• Need for sameness, always changing but
• Past, present, future
• Agency relates to a variety of similar topics
  autonomy, empowerment
• Efficacy
• Glaser status packages
• Power exchange theory

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continued

• Community and membership
• Helping role importance of giving back
• Role of communication/language
• We know life participation is at risk when
  communication is impaired
• Most discussions of theoretical response to such
  a profound life threatening illness emphasize the
  critical role of validating social interactions,
  yet ignore the loss of the communication tool for
  persons with aphasia and their significant others

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Domains of Self

• Culture
• Roles (situational)
• Interaction (relational)
• Biographical

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Self and Aphasia

• Cultural domain advocacy, stigma, cultural
  perspectives on competence
• Role Language system fundamental to most
  important roles in which humans engage
• Interactions Communication as the base for
  relationship
• Biography I am vs. I used to be vs. I want
  to be

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On-Line PostsArthurs Story

• http//www.shrs.uq.edu.au/cdaru/aphasiagroups/Stor
  ies/Stories.htmla
• My name is Arthur Thompson.
• I was born on the Isle of Man.
• It is situated in the middle of the Irish Sea.
•  
• Before my stroke, I was an international project
  officer.
• I was involved in the construction industry and I
  worked all over the world.
• My most interesting time was working in Africa.
• I had a stroke in 1996 which left me totally
  speech paralyzed.
•  

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Arthurs story continued

• For the first time in my life, I now have the
  freedom to spend time on myself ... and on the
  things I really want to do...instead of working.
• My wife Nina and I established the "World
  Reforestation Project" in 1991. My interest and
  Aim is to promote the WRP.
• As I do not speak, I use a voice simulator. This
  is controlled through my computer. This allows me
  to communicate. Thank GOD for this wonderful
  technology.
• I make speeches to Service clubs and sailing
  clubs etc.
•  My hobbies are sailing photography, creating
  drift wood designs and things environmentally-frie
  ndly.

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Addressing personhood in aphasia treatment

• Clinician as part of the social space for framing
  self, identity, personhood
• Clinician as active facilitator of storying of
  self (narrative reconstruction)
• Person-centered goal-setting
• Person-centered treatment contexts
• Timelines for intervention to accommodate long
  term life changes

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Hagstroms clinical questions

• Who am I?
• Who are you?
• Who are we?
• Emphasis on social role of clinician
• Emphasis on clinical discourse
• Clinician as animate tool
• Clinician as part of the life story

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Clinician as active facilitator of storying of
self

• Provide tools for storying of self (narrative
  reconstruction)
• Animate
• Inanimate
• Seek out life stories and explore ways in which
  aphasia has disrupted those stories (ALA)
• Encourage/support sharing of biographical
  particulars
• Participate in new intervention
  activities--family training, communication access
  and ramps, social role negotiation, supported
  conversation, conversational coaching, narrative
  reframing, stroke stories or narratives, on-line
  involvement (Chicago, Connect, Queensland) all
  of these address issues of identity and/or self
• Assess challenges to self and self-authoring
  tools in all four domains of self.

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Person-Centered Goal Setting

• Clinician centered evolved to
• Client centered evovling to
• Person centered
• Requires
• Time
• Team (sometimes)
• Listening
• Leaving value systems at the door
• Inclusion of all key people

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Person-Centered Treatment Contexts

• Groups
• Communication/conversation
• Life Stories
• Support
• Dyadic interaction in treatment
• Relationship contexts
• At the level of society
• Communicative access
• Political and legislative

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Timelines

• The work of maintaining or renegotiating self,
  identity, personhood is ongoing
• Interventions must also be ongoing, changing in
  type, context, setting, and goals
• Need better, more appropriate outcome measures to
  capture the personhood domain in interventions
  that continue months and years post stroke

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Bottom Line A Relational Framework

• In aphasia, personhood can only be supported if
  the relational context is grounded in I-Thou,
  as compared with I-it, understandings.
• For the person with aphasia, the focus must be on
  I as agent, as compared with me as acted
  upon. Agency is critical.

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As summed up by Jon Lyon

• It seems, though, as complex and varied as
  their identity/role shifts may be, it's critical
  that we grasp that "hidden" within these very
  "inner" realms of selfdom (shared respect, honor,
  trust, caring, mutuality, touching, giving) ARE
  greatest promise and reward for recovery and are
  NOT destined, necessarily, to change or
  decline.