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RELATIONAL APPROACHES IN APHASIA AND

ACQUIRED BRAIN INJURY REHABILITATION

Kate Meredith

Speech and Language Therapist

Family Therapist

tillyfs@hotmail.com

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MY CONTEXT AND POSITION White British middle-class female

Partner, mother, daughter, sibling, step-daughter…

Speech and Language Therapist working with people with acquired brain injuries and neuro-disability for 10 years

Medical model of disability Social model of disability ‘Both/and’ approach

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MODELS OF DISABILITY Medical model: diagnosis, impairments, activity limitations,

participation restrictions

Social model: disability only exists when society fails to support difference; removal of barriers can mean people can experience independence and equality

Both/and: identifying how trained professionals can contribute to successful rehabilitation across impairments, activity limitations and participation restrictions, while considering and influencing societal perception and integration of disability

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FAMILY THERAPY TRAININGFamily Therapist “Family and Systemic Psychotherapy helps people in close relationship

help each other. It enables family members to express and explore difficult thoughts and emotions safely, to understand each other’s experiences and views, appreciate each other’s needs, build on family strengths and make useful changes in their relationships and their lives” (Association for Family Therapy and Systemic Practice)

Services commonly employing Family Therapists Child and Adolescent Mental Health Services Older Age Psychiatry Eating Disorders Couples Therapy Addictions

What can be brought into the field of ABI and communication disorders?

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FAMILY THERAPY AND APHASIA IN THE LITERATURE

Family therapists with experience of working with

communication disorders such as aphasia, or joint work

between family therapists and speech and language therapists

can produce results that are very meaningful for families living

with communication disorders following ABI

(Bowen et al., 2010; Herrmann, 1989; LarØi, 2003; Nichols et al., 1996; Stiell et

al., 2007; Währborg and Borenstein, 1989; Währborg, 1989).

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RESEARCH INTO SPECIFIC APPROACHES WITH ABI / APHASIA

Emotionally focussed therapy with couples

Stiell & Gailey (2011) Yeates (2013) Yeates et al (2013)

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SOCIAL CONSTRUCTIONISM

Key figures: Cecchin, Boscolo, Tomm, Andersen, Anderson and Goolishan, Burr.

From Vivien Burr (2003): Knowledge of the world is constructed within a social

community, through language

Belief systems are highly influenced by social interaction

Interaction occurs through language (verbal and non-verbal communication) in conversation (spoken and written)

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SOCIAL CONSTRUCTIONISM (2) Truth is not discovered but constructed

Not constructed by individuals but by communities in conversation

Useful constructions of objects, events and relationships are retained in conversation; non-useful constructions are discarded

Language is a pre-condition for thought

Language can be seen as a form of social action

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SO WHAT HAPPENS WHEN SOMEONE ACQUIRES AN ABI OR APHASIA?

In worst case scenario:

Not able to contribute to conversation

Not able to influence beliefs held in community (including family)

Not able to participate in constructing truth and reality

Disempowerment

Isolation

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FAMILY LIFE CYCLE Families develop through key stages, such as leaving home,

becoming a couple, starting a family, a family with adolescents, launching children, later family life (including retirement, illness, death)

Moving between stages involves transition, which can be challenging and requires family adjustment

The FLC can be disrupted by stressors vertical stressors such as family secrets, rules, taboos horizontal stressors such as illness, divorce, bankruptcy

Families can experience stress and anxiety when either type of stressor is present, which may affect emotional transactions and the emergence of individual symptoms

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SO WHAT HAPPENS WHEN SOMEONE ACQUIRES AN ABI OR APHASIA? ABI can be conceptualised as a horizontal stressor that the

family is required to adapt to and move on with, in order to fulfil further life cycle goals.

If the family becomes stuck, it is harder to grow and complete the development tasks necessary to move on to a following stage (Leaf, 1993).

Do we have the resources and skills to effectively support these families?

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RESILIENCE Perlesz et al (1999) – ABI research attends more to relatives’

stress and burden than exploring resilience and positive family outcomes

Partner coping during chronic illness is influenced by many factors, including the ability to communicate reciprocally with one’s partner (Revenson, 2003)

Rolland (1994) believes couples who can communicate openly, directly and sensitively can better cope with chronic disorders

Reciprocal communication and affective relations are important factors in family coping (Anderson et al 2002; Florian et al 1989, Kreutzer et al, 1994a)

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SO WHAT HAPPENS WHEN SOMEONE ACQUIRES AN ABI OR APHASIA?

Open, reciprocal communication is associated with coping, but this is not always possible.

How do couples and families managing communication difficulties following ABI manage issues such as establishing boundaries around the illness and achieving balance in their relationships?

How they can best be supported?

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WHAT CAN WE DO?

Work to:

Avoid silencing of a person with aphasia (PwA)

See the aphasia as a problem for the family rather than the individual

Promote family growth

Promote resilience

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INVOLVING FAMILY MEMBERS Invest in therapeutic relationship, considering how our

context influences us

Make invitation clear from the start – this is the way we work

Frame the family as united against the communication disorder

Problem-free talk: gain understanding of communication in family prior to the ABI, family strengths, activities, jokes… what characterises them other than the communication disorder?

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NARRATIVE THERAPY What language do we use?

Victim Patient Client Survivor Person

Do we situate people in relation to their ABI forever more?

How can we model a different way of thinking about communication disorders?

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NARRATIVE THERAPY (2) People make sense of their world by telling, and listening to,

stories about their lives. These stories are enormously powerful.

Conversations can shape new realities

Weak voices have little power to change stories

How are PwA’s stories told? What narratives do these begin to create for them, their partners and their families?

(Can you think of a story told about you by friends or family that doesn’t fit with your reality? Have you been able to challenge it?)

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USING NARRATIVE IDEAS IN REHABILITATION Hear problem fully, understand how it makes them feel. Separating problem from person – “he’s aphasic” vs. “the aphasia” Understand the influence of the problem on the person, the couple, the

family. When is it most or least powerful, silencing, or disruptive to family life?

What influence can they all also have on the aphasia? What happens to the aphasia when Sarah draws a picture for her father? Or when Daniel gives his mother more time in conversation?

Have there been other times that the family had to unite against something difficult? How did they do this?

Reflect on times in recent past where communication has been easier. Where else can we see this happening? How could we all work against the aphasia to see more examples of this in the present and future? More often in this context, moving to other contexts, different relationships…

Therapeutic letters – witness subjugated stories, give permanence, historicise progress,

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USING NARRATIVE IDEAS IN REHABILITATION (2) Consider the power balance in the room. We may have

useful clinical expertise, but our clients are experts in their own situation, their own story

Reauthoring lives and defining themselves in non-pathologising, non-problem saturated ways

Good examples of externalisation in healthcare: Race For Life 2013: “Cancer, we’re coming to get you” Anti-Anorexia league: Epston and Madigan, 1993. "Communities

of people who have taken a stand against the oppressive regimes of anorexia and bulimia in their own lives and are prepared to share their stories with others who are struggling with these problems."

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GENOGRAMS AND ECOMAPS Largely non-verbal

Permanence of writing and drawing supports comprehension and retention

Enables understanding of who else to involve, understanding priorities, functional goals for communication therapy and potential for isolation

Enables understanding of family life cycle stage and transitions that may be affected by ABI

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Genogram example

Tom36

Brian40

Alice34

May72

Mike78

Sue70

Ben28

Kay30

Sam10

Bob74

Lives in Australia Tom – Stroke 2013Severe expressive aphasia,

moderate receptive aphasiaTeacher, book club, plays cricket

Dementia DepressionLives with May Visited by Tom most daysPlan to move to care home

Final year of primary schoolEmergent difficult behaviour Not wanting to visit father in rehab unit

Due to commence

privately funded IVF

TeacherRunning club

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Ecomap example

Tom, Alice, Sam, Bob,

May

Sam’s school

Bob’s care home and

professionals

May’s GP and Community Psychiatric

NurseFertility experts

Friends, book club, cricket, running club

Tom and Alice’s work

Tom’s healthcare

professionals

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WHAT NEXT? Is a new profession of people with skills in family therapy and

neuro-rehabilitation is required? (Johnson and McCown, 1997)

Should there be more professionals working in neuro-rehabilitation services to complete the 4 year masters-level training in Family Therapy? (Bowen, 2007)

Without professionals qualified to work in neuro-rehabilitation and family therapy, will developments in services will be hindered? (LarØi, 2003)

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FURTHER READING Bowen, C., Yeates, G. N., & Palmer, S. (2010) A Relational Approach to

Rehabilitation: Thinking about Relationships after Brain Injury. London: Karnac.

Burr, V (2003) Social Constructionism, 2nd Ed. Routledge: London. Herrman, M (1989) On the Possible Value of Family Therapy in Aphasia

Rehabilitation. Aphasiology 3 (5). LarØi, F., 2003. The family systems approach to treating families of persons

with brain injury: a potential collaboration between family therapist and brain injury professional. Brain Injury 17, 175–187.

Leaf, L.E. (1993) 'Traumatic brain injury: Affecting family recovery.' Brain Injury 7, 543–546.

Monk, G., Winslade, J., Crocket, K., & Epston, D. (Eds.) (1996) Narrative Therapy in Practice - The Archaeology of Hope. San Francisco: Jossey-Bass.

Nichols, F., Varchevker, A., & Pring, T. (1996) Working with People with Aphasia and their Families. Aphasiology 10 (8).

Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19: 211-223.

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FURTHER READING Stiell, K. & Gailey, G. (2011). Emotionally focused therapy for couples living

with aphasia. In J.L., Furrow, S.M. Johnson & B.A. Bradley (Eds.), The Emotionally Focused Casebook (pp.113-140). New York: Routledge.

Währborg, P., 1989. Aphasia and family therapy. Aphasiology 3, 479–482. Währborg, P., Borenstein, P., 1989. Family therapy in families with an

aphasic member. Aphasiology 3, 93–98. White, M., Epston, D., 1990. Narrative Means to Therapeutic Ends. Norton,

New York. Yeates, G.N. (2013). Towards the neuropsychological foundations for

couples therapy following acquired brain injury (ABI): A review of empirical evidence and relevant concepts. Neuro-Disability & Psychotherapy, 1(1), 117- 150.

Yeates, G.N., Edwards, A., Murray, C. & Creamer, N. (2013). Couples therapy as social cognition intervention following acquired brain injury: Single case evaluations of emotionally-focused couples therapy (EFT). Neuro-Disability & Psychotherapy 1(2), 151-194.