The Impact of Aphasia to the Quality of Life

Introduction- Different types of language disorder- Aphasia: Patients with language disorder after stroke

- Why this Topic?

A kind of “invisible” disability To find out the difficulties encountered How they overcome Social system is well enough? Suggestion Raise social awareness

- Two types of research: scientific(many) and social(few) Quality of Life

Literature Review

-“In aphasiology, there is little published research on what quality of life is like for people who have aphasia.”(Madeline Cruice et al., 2008)

-Research on different types of patients, not specific type

-Much more about children, not adults

Literature Review: Relating Quality of Life

- About measures of Quality of Life Madeline Cruice et al., 2008. “Comparing and contrasting

views: building consensus around quality of life with aphasia ” A.J. Carr et al., 1996. “Quality of Life Measures”

- About one or some aspect(s) of Quality of Life J. Law et al, 2005. “Making sense in primary care: leveling the

playing field for people with communication difficulties”: (Communication)

Madeline Cruice et al., 2008. “Comparing and contrasting views: building consensus around quality of life with aphasia ”(Communication, Family’s support)

Yoav P. Talmi, 2002. “Quality of life issues in cancer of the oral cavity” (Self-image/Identity)

Methodology

Target Group:Adult patients of acquired aphasia

Acquired: clear comparison before and after acquisition of aphasia

Adult: More structured life -> impact more obvious

MethodologyData collection: Interviews

First-hand assessment: Patients

Second-hand assessment: Speech Therapists and social workers

Contact through speech therapy centres ->licensed speech therapists and diagnosed patients

Cantonese speaking

MethodologyInterview questions (conducted in cantonese):你認為語言障礙為你 (的病人 )帶來什麼困難？你 (的病人 )又如何應付或解決這些困難？

What are the difficulties brought to you (your patient) by aphasia? How do they overcome these difficulties?

你認為語言障礙有否為你 (的病人 )帶來負面情緒？Do you think aphasia brings you (your patient) negative emotions?

你 (的病人 )有沒有被他人歧視的經驗？Have you (your patient) been discriminated by others?

你 (或你的病人 )希望政府提供甚麼服務或資助？What service or assistance would you (your patient) like the government to provide?

你認為語言治療有什麼限制？能多大程度地幫助病者？What do you think are the limitations of speech therapy? To what extent can it help?

MethodologyData analysis:

Model adopted from XXX (paper)

Discussion:

In-depth discussion of the changes in life brought by aphasia

Evaluate the impact on quality of life with respects to different aspectse.g. cause of negative emotion (internal or external?)

Conclusion:

Give recommendations to help this minority group, e.g. raise social awareness, public education etc.

Quality of Life

- What is quality of life? For those who have impairment or disability Degree of well-being Social, not in the view of scientific aspect

i.e. not (only) the measure of physical health status Qualitative, not quantitative

- No agreed definition

- Factors affect definition: the purpose of usage situation of subjects

- Generic rather than disease specifici.e. can be applied into different diseases

Quality of Life : Variety of Dimensions

Physical, Mobility, Body image, Self image, Communication, Psychological, Interpersonal, Finance, Life expectation, Achievement, System of beliefs and values, Emotion, Involvement in activities, Co-morbidity, Independence, Stigmatization, Loneliness, Discomfort, Relationships, Sense of security, Meaning in life, Environment, Work, Leisure time, Life satisfaction, Happiness, Self-care, Pain, Depression, etc…

Our Model

Two main aspects:1. Personal a. Physical b. Metal

2. Social

Seven Dimensions

1. Independence/ mobility

2. Therapy/ Effectiveness of Diagnosis

3. Psychological/ Self-image/ Stigmatization

4. Communication

5. Interpersonal/ Social Network

6. Career/ Finance

7. Social/ Government

Preliminary of Interview

Therapist Background

Raymond Fong Vice-chairperson of the Hong Kong Association of

Speech Disorder Responsible for emergency case

Types of Language Disorder

Language disorder include congenital and acquired cases

Congenital relatively minor problems:

stammering tongue

"lazy sound" (inproper pronunciation).

difficult to treat

Accquired due to:

stroke

Diseases

brain damage etc.

Daily Life

For the acquired case, The patients have to accommodate to the changes due to the disability, especially their communication with families.

In minor case they may talk using sentence with simple structure, but they cannot discuss a issue in depth.

In serious case they may even be unable to tell their basic need to their families.

Communication

When the patient is told to do something, for example, raise up his hand.

The patient may:

1. not understand what is the meaning of “ raising up his hand”

2. know he have to raise something, but don’t knows what he should raise.

Social Network

Some patients are afraid of going outdoor.

However, some patients organize gathering to meet other patients.

Psychological

Therapist may encourage and comfort if the patients cannot control their emotion during the treatment.

According to the situation, patients may be referred to psychiastrists.

Social / Government

Not enough therapists and resources provided:

Patients only meet the therapist once every three week for half an hour.

Some hospital cannot provide such therapy

People who suffer swallowing disorder have a higher priority, reducing the chance of therapy treatment to other patients

Provide public education to raise the social awareness,

(Most people concern the physical functioning rather than language issues)

Social / Government

Career

Depend on their situation

1. The ability of accommodation

2. The nature of the work

3. The level of recovery

As the types of work are greatly limited, in most of the cases, the patients will completely retire.

Role of Therapists:

To provide treatment to the patients

Educating heir family and hospital staffs and explaining how to communicate with the patients.

The therapy treatments take are mostly last for nine months, and the therapists will meet the patient for half hour and only one time every three weeks.

Therapy / Effectiveness

Therapy include several parts:

Counseling the patients

Explain their situation and the chance of recovery.

Encourage the patients

Counseling their family

Explain their role in the situation

Educate the family members, (how to communicate with the patients)

Physical training

Facial muscle training

Therapy / Effectiveness

The effectiveness of the therapy treatment is greatly depended on individual situation.

The first half year after the accident is regarded as the ‘Golden Period‘, the chances for the patients to recover are greatly increased.

If the aphasia is caused by some chronic diseases, the effectiveness of the therapy becomes limited because of the irreversible situation, such as the Down's syndrome.

Therapy / Effectiveness