5/1/2014 QualityofLife Wellness and Wellbeing...

5/1/2014

1

Wellness and

Quality of

Life

Dorothy M. Griffiths,

C.M., O.Ont, Ph.D.

Brock University, St. Catharines, ON CA

[email protected]

Some Key Elements of Wellness and

Quality of Life

• Wellbeing

• Emotional Wellbeing

• Lifelong learning

• Leisure pursuits

• Natural connections

• Empowerment and self-determination

• Social inclusion

• Self esteem

Element One is Wellbeing

Wellbeing=Integrity of physical

and mental health

HealthFitness

Nutrition

Freedom from disease

Mental WellnessFree from symptoms

Absence of undue stressors

Learning

from the

Masters:

Robert

Sovner &

Bill Gardner

Integrated Biopyschosocialinfluences on Dual Diagnosis

Holistic approach

Psychological

Biological

5/1/2014

2

The Human Genome ProjectThe Human Genome ProjectStory of JohnStory of John

• John was referred as a sexual problem-insertion of objects up his rectum, frotteurism, and what they called “aggressive hugging”, although this is less as he gets older. He also has engaged in some stripping of clothes.

I asked• How is his vision? his hearing? his skin? his sleep?

• Any seizures? Prolonged outbursts?

• Is he engaging, endearing, humorous and always wanting to please?

• Does he crave for attention and is he competitive with others over that attention?

• When he gets excited does he do a little upper body squeezing thing and facial grimacing?

• Does he have an unusual walk and a deep hoarse voice?

SMITHSMITH--MAGENIS SYNDROMEMAGENIS SYNDROME

Benefits of syndrome identification (Griffiths & Watson,

2004)

• Understand the reality of the individual

– The persons strengths and skills– Possible medical vulnerabilities– Associated mental health risks or

resiliency

• Leads to increased support for families, care-providers and the individual

• Assists in communication between professionals

• Allows us to learn more about the syndrome and it’s biopsychosocial influences

MEDICAL ISSUES

• Angelman

• Down

• Fragile x

• PKU

• Prader Willi

• Rett

• Smith Magenis

• Seizures, sleep and scoliosis

• Congenital heart, hypothroidism, hearing and vision problems, Alzheimer’s

• Mitral Valve prolapse

• Congenital heart defect, seizure

• Diabetes mellitus, hypertension, sleep

• Seizures, sleep, scoliosis

• Hirschsrunge’s, hearing loss, cardiac defect, liver disease, low cholesterol, pulmonary insufficiency, vision, peripheral neuropathy, cardiac, seizures etc.

5/1/2014

3

• Persons with Fragile X are inclined to experience extreme anxiety problems

• Dementia in persons with Down Syndrome

• Sleep disturbance is increased in many syndromes

Mental Health IssuesBiomedical or behavioral models

The wrong question?

• Common behaviors

• Biomedical factors and influence on behaviour

• Psychological vulnerabilities

• Learning styles and implications to task or

avoidance of tasks

• Sensitivities to social/environmental situations

been evaluated and changes incorporated?

• Strengths and challenges associated with the

syndrome

• Syndromic implications for preventative or

proactive approaches

• Functional replacements to help to ease

functioning or distress

• Consequences that would be best to use or

avoid

• Dissemination to all concerned

– (Kerry Boyd, Kristin Baker, Emily Moxey, Dalena Mustillo, Sylvana

Yeung, Julie Krieger, Faten Matar, Linda Moroz, and Sarah Ruiter)

ELEMENT ONE WAS WELLBEING:

PHYSICAL AND MENTAL

Element Two

is Emotional Wellbeing

SPARK FOR MY PASSION

.

5/1/2014

4

.

APPROACHES

FOR TREATMENT OF

CHALLENGING BEHAVIORS

WERE TRANSFERRED FROM

THE FACILITIES TO

THE COMMUNITY

The 5 Yr Plan and Psychiatric Pinball

GroupHome

General Hospital

PsychiatricUnit

PoliceFamilyHome

Behavior Home

GroupHome 2

Facility wherehe began

Physical Effects of Environment

without Human Contact

An habilitatively

appropriate environment

• An environment can play a role in influencing

challenging behavior in individuals.

• So to, the environment can play a role in

developing appropriate and prosocial

behaviors.

STRUCTURE OF THE

HABILITATIVELY APPROPRIATE

ENVIRONMENTEstablished Expectations

Known contingencies

Strong social motivation

Choice

Positive social role, self-labels, self-concepts, and positive feelings about

oneself and one’s attributes

Skills of recognizing, labeling and expressing negative emotions

appropriately

Normalized

• Rhythm of the day

• Involvement

participation in all aspects of daily life

5/1/2014

5

Normalized

• Caution: Even community agencies

can be institutional

PHYSICAL CHARACTERISTICS OF

THE HABILITATIVE ENVIRONMENT

Proper Conditions- safe/clean/comfortable

Clustering

Space and Size

Stability

Opportunities for stimulation and learning

Promotes learning

• Learning skills to increase independence

• Learning skills to increase coping

• Learning skills to increase enjoyment

• Learning skills to increase relationship development

• Learning skills to increase personal safety and wellbeing

Provides

an Enriched

Lifestyle

• Activities

• Relationships- staff and

housemates, neighbors

• Inclusion and social

inclusion

Individualized • Choice

• Autonomy

• Unique differences and

preferences

Safety and Security

Studies show that people can relive and

re-experience social pain more easily than

physical pain and the emotions they feel

are more intense and painful.

Chen, Williams, Fitness, Newton, 2008

•Physical pain

is often short

lived

whereas social

pain

can last a life

time.

5/1/2014

6

AN HABILITATIVELY

ENVIRONMENT IS THE

FOUNDATION FOR A GOOD LIFEIfIfIfIf

rehabilitation is designed to return a person to a state of dignity;

ThenThenThenThen

habilitation should be designed to establish a state of dignity that the person may have never previously been afforded.

Your life:

• What makes your life good?

• What can interfere with your good life?

• What about your life makes you feel secure?

• What can challenge your security?

• What creates comfort and peace for you?

• What can disturb your comfort or peace?

• What makes you feel good about yourself?

• What can make you doubt yourself or feel less able?

Primary goals of Good Lives Model

• To create – a state of affairs,

– state of mind,

– activities,

– interactions

– personal characteristics,

– experiences

– relationships

• that the person would seek to create and for which achievement of them provides a good quality of life and personal wellness.

• (Adapted from J. Trenhaile: Summary of the good lives model.

http://dhs.sd.gov/ddc./Goodlivesmodel.pdf)

The Good Lives Model

adapted

To

General

Habilitation

With Persons with

Intellectual

Disabilities

• Habilitation: If rehabilitation is returning someone to a state of dignity; then habilitation is providing individuals the skills and life that provide dignity.

• For persons with intellectual disabilities we need to provide the dignity they may never have been afforded.

Trauma in the lives of persons with

intellectual disabilities:

The hidden mental health challenge

to wellbeing

TRAUMA AND THE ROLE OF THE

ENVIRONMENT IN TREATMENT

PATH OF

RETRAUMATIZATION

Abuse

Psychological Distress

Challenging

Behavior

Intrusive reactive

intervention

5/1/2014

7

PATH OF

RETRAUMATIZATION

ReAbuse

Psychological Distress

Challenging

Behavior

Intrusive reactive

intervention

Conflicting Approaches

• Traditional ABA response

to self-injury in a person

who has experienced

trauma, when the self-

injury is shown to have

the function of “seeking

attention”…..so do we

reduce attention to not

strengthen the SIB and

teach alternative ways to

get attention?

• Traditional Trauma

Approach for a person

seeking attention might

be to identify the

behavior as a need for

comfort and respond by

giving the person needed

attention at these times

of distress?

Reconciliation of Theories

• Create an habilitative environment where the individual is provided a consistently positive sanctuary (Bloom 2005) of safety (reducing all the motivational operations for stress and increasing elements of security) that is trauma informed or trauma sensitive and where attention is nonconditional, of ample frequency, duration, quality and intensity.

• Plus ensure the person has the skill to ask for and seek support when feeling distress and that the individuals in the environment are responsive to these requests

• Then if self-injury occurs, respond to the person to give comfort but ensure that the frequency, intensity, duration, and quality of that attention is different than and not as strong as the attention provided unconditionally or at other times when the behavior is not occurring.

PATH OF TRAUMA RESPONSIVE SETTING

Abuse

A state of emotional

Equilibrium

Challenging

Behavior

Attention to provide sufficient support

to move person to a safer place but

qualitatively different than that

when not in distress

Trauma Sensitive

Culture

PATH OF TRAUMA RESPONSIVE SETTING

Abuse

A state of emotional

Equilibrium

Challenging

Behavior

Attention to provide sufficient support

to move person to a safer place

Trauma Sensitive

Culture

A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE

ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL

NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE

CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE

BEHAVIORAL SUPPORTBEHAVIORAL SUPPORTBEHAVIORAL SUPPORTBEHAVIORAL SUPPORT

Laura Mullins (2012). Trauma-Informed Mental Health Service Delivery: Examining Parallel Processes in the School Treatment Program. Unpublished PhD thesis.

5/1/2014

8

Element Two

• Wellbeing

• Emotional Wellbeing Element Three is Lifelong Learning

The Lost Art of Teaching

• In the 1970s and the hay day of behavior management, the focus of much intervention was teaching.

• The art of teaching unfortunately has largely been lost in the field.

• Although teaching has shifted from just functional skill development (i.e., toileting etc.) to skills that allow the person to access growth opportunities and personal choice, current front lines staff have not been trained as teachers.

• Habilitative learning opportunities are not occurring because we as field have lost the skills.

What allows us to cope when things

are not right?

• Skill:

– Allows you to have enhanced freedoms and

opportunities

– Allows you control when things don’t go to your

liking by either altering reaction/coping skills to a

negative event or using our skills to change the

situation

SOCIAL SKILLS THAT GENERALIZE

• Select relevant behaviors• Use participants that have

common social networks• Do not use participants that

have the same needs• Train in the natural

environment• Train social skillfulness not

just discrete social skills• Apply multiple examples• Reinforce the new skill and tie

it in to the natural occurring reinforcements

» ( adapted from Stokes and Baer, 1977)

Griffiths, Feldman, & Tough, 1997

Outcomes (Accreditation Ontario, 2000)

• Choice of personal goals, where and with whom they live, where they work, their daily routines, services with whom they share personal information, of access to intimate relationships.

• Satisfaction with services and personal life and the realization of their personal goals.

• Access to friends and natural connections.

• Inclusion in use of their environment, participation, interaction, integration, and social roles in the community.

• Human Rights issues such as respect, fair treatment, the exercise of rights, freedom from abuse, health, safety, and the experience of continuity and security.

5/1/2014

9

• The goals of

therapy should

be more than

the reduction of

problem

behavior.0

5

10

15

20

25

30

1stQtr

3rdQtr

Aggression

SIB

Increase Personally and Socially

Valued Outcomes

• Outcomes of value should also reflect

• A) increase in skills and self control, &

• B) improved quality of life now afforded the individual

0

5

10

15

20

25

30

1stQtr

2ndQtr

3rdQtr

4thQtr

Aggression

SIB

Communication

Socialopportunities

Feldman, M., Condillac,

R.A., Tough, S., Hunt, S.,

& Griffiths, D. (2002).

Effectiveness of

community positive

behavioral intervention

for persons with

developmental

disabilities and severe

behavior disorders.

Behavior Therapy, 33 (3),

377-399.

Element Three

• Wellbeing



Element Four is Leisure Pursuits

Element Four

• Wellbeing




5/1/2014

10

Element Five is Natural Connections

Harry

Harlow

IMPORTANCE OF PEER RELATIONSHIPS

MOTHERS

PEERS

MOTHERS AND

PEERS

Wave

Hand Shake

Far Away Hug

Close Hug

Self

StrangersProfessionals

Walker Hirsch & Champagne, Circles.

Element Six

• Wellbeing





Element Six

Empowerment

5/1/2014

11

• Emerging Practice is based on both solid

science and respect for

philosophical/humanitarian

perspectives.

• Recognition of rights.

• Increased focus on self-advocacy, setting personal goals, making life choices, and assert themselves in time of disempowerment.

• A culture of respect for the rights of all and an ownership of the responsibility that is assumed in the exercise of those rights.

• 3Rs-rights, respect, responsibiity

Empowerment

UN Convention on the Rights of Persons with

Disabilities (2006)

• A Basic Principle is the respect for inherent dignity, individual autonomy including the freedom to make one’s own choices,

and independence of persons (Article 3)

Self Determination

• “Refers to the attitudes and abilities required

to act as the primary causal agent in one’s life

and make choices regarding one’s actions free

from undue external influence or

interference.” (Wehmeyer, 1992, pp. 305)

Rise of Self-Determination

History behind the rise of self-determination for persons with intellectual

disabilities:

Wave 1: Professionalism

Wave 2: The Parent Movement

Wave 3: Self- advocacy

• Traditionally planning – orchestrated around government initiatives and agency planning

– often does not take into account individual differences and preferences &

– can lead to a decreased quality of life and can often represent a vulnerability for emotional and behavioral challenges

Traditional Planning

Directed by the Person

Involves significant

others

Addresses individual goals and

preferences

Provides supports to meet goals

Individual Centered Planning

5/1/2014

12

Greatest changes in outcomes

Outcome Baseline Follow-up

Choose where to work

20.7 44.8

Have friends 15.5 37.9

Have intimate relationships

32.8 58.6

Decide when to share information

51.7 79.3

Live in integrated environments

8.6 32.8

Person centred plans vs. behavioral

plans

Rights vs. Risks

and

Responsibilities

Element Six

• Wellbeing





• Empowerment

Element Seven is

SOCIAL INCLUSION

5/1/2014

13

9179 76 72

32 32 2720 16

6

820

2021

3746

27 4463

66

FIGURE 9: PERCENTAGE BY FREQUENCY OF COMMUNITY INCLUSION

IN VARIOUS ACTIVITIESFrequently Sometimes

Agency Survey Q 43. Rate how often the individual engages in the following (list given).

Griffiths, Owen & Condillac, 2010

Not just about being in the community but part

of the community

Element Seven

• Wellbeing





• Empowerment

• Social Inclusion

Element Eight is

Self-Esteem

PERSONAL ACHIEVEMENTSElement Eight

• Wellbeing





• Empowerment

• Social Inclusion

• Self Esteem

5/1/2014

14

Elements of Life Quality

Wellbeing and health

Emotional wellbeing

Lifelong learning

Leisure pursuits

Natural connections

Empowerment

Social inclusion

Self esteem ……….these together spell

WELLNESS!!!WELLNESS!!!WELLNESS!!!WELLNESS!!!

Key ReferencesAccreditation Ontario (2000). Enhancing the rights and personal freedoms of people with disabilities. Toronto: Author

Agnew, S., Bishop, C., Gosse, L., Stoner, K., Vyrostko, B., Terreberry, T., Tarulli, D., Tardif-Williams, C.,

Bloom, S. L. (1994). The Sanctuary Model: Developing generic inpatient programs for the treatment of psychological trauma. In M. B.

Williams, J. F. Sommer & C. T. Westport (Eds.), Handbook of Post-Traumatic Therapy: A Practical Guide to Intervention, Treatment, and

Research. Westport, CN: Greenwood Publishing. Griffiths, D., Feldman, M., & Owen, F. (2010). Rights, respect and responsibility: Rights in

everyday life. Welland, ON: Community Living Welland Pelham.

Chen, Williams, Fitness, Newton (2008). When hurt will not heal: exploring the capacity to relive social and physical pain. Psychological

Science, 789-95. doi: 10.1111/j.1467-9280.2008.02158.x

Feldman, M., Condillac, R.A., Tough, S., Hunt, S., & Griffiths, D. (2002). Effectiveness of community

positive behavioral intervention for persons with developmental disabilities and severe behavior

disorders. Behavior Therapy, 33 (3), 377-399.

Gosse, L., Griffiths, D., Feldman, M. & Owen, F. ( in progress). Individual lifestyle planning and the relationship to achieving outcomes.

Griffiths, D., Feldman, M., & Tough, S. (1997). Programming generalization when teaching social skills to adults with mental retardation: effects

on generalization, social validity and self-report. Behavior Therapy, 28, 253-269.

Griffiths, D. M., Condillac, R., . & Legree, M. (2014). Genetic Syndromes and Applied Behaviour Analysis. UK: Jessica Kingsley Publishing.

Griffiths, D., Owen, F., & Condillac, R. , Hamelin, J., & Robinson, J. (2010). Final report of agency and family surveys. Evaluation of the Facility

Initiative. Ministry of Community and Social Services Research Branch.

Griffiths, D. & Watson, S. (2004). Demystifying syndromes associated with developmental disabilities. In D. Griffiths & R. King, (Eds.),

Demystifying Syndromes. NADD: Kingston, New York.

Harlow,H. & Zimmerman, H. (1959). Affective response in infant monkeys, Science.

Schalock, R. Brown, I. Brown, R., Cummins, R. Felce, D. Matikka,L. Keith,K. & Parmenter, T. ( 2002 ). Conceptualization, Measurement, and

Application of Quality of Life for Persons With Intellectual Disabilities: Report of an International Panel of Experts.

Trenhaile, J. Summary of the good lives model. http://dhs.sd.gov/ddc./Goodlivesmodel.pdf

Wehmeyer, M. L. (1992). Self-determination and the education of students with mental retardation. Education and Training in Mental

Retardation, 27, 302-314.

United Nations (2006), UN Convention on the Rights of Persons with Disabilities. New York: UN.

Walker-Hirsch, L. & Champagne, M. (1988 ). Circles, California: Stanfield Publ.

5/1/2014 QualityofLife Wellness and Wellbeing...

Documents

Transcript of 5/1/2014 QualityofLife Wellness and Wellbeing...