More than just an activity

More than just an activity: Learning, Bonding and self actualization with Creative Paper Clay for individuals affected by Parkinson's Disease. Michael Tan Koon Boon School of Art, Design and Media, Nanyang Technological University

Presentation Overview •  Introduction: Parkinson’s Disease in Singapore •  Course of Parkinson’s Disease •  Impact of Parkinson Disease: Patients and Caregivers •  Project Questions •  Guiding Theoretical concepts: Arts in Context of Health •  Approach •  Outcomes and Observations •  Discussions •  Conclusions

Introduction: PD in Singapore •  Parkinson's Disease(PD) is the 2nd most common neurodegenera7ve disorder a9er Alzheimer's disease in Singapore(NNI 2005). •  The prevalence of PD in Singapore is comparable with that in North America and Europe(Tan 2004). •  3 persons in every 10000 is affected by the disease; this accounts for 0.3% for the popula7on aged 50 and above (Tan, Venketasubramanian et al. 2007). •  The number of elderly is expected to increase from 8.4% in 2005 to 18.7% in 2030 (Ministry of Social and Family Development 2006) hence the prevalence of PD is expected to rise correspondingly.

Course of Parkinson Disease

Early stage

Biological Impairments Cardinal signs of Parkinson’s Disease (Dewy in Cantrell,2006): •  Akinesia •  Rigidity •  Tremor

Advanced stage

Disease Severity

Increased level of disability It is inevitable that one will eventually need to be a recipient of care as medica@on treatment become increasingly ineffec@ve in advanced stage of the disease. (Mar@nez et al 2008)

Impact of Parkinson Disease

Model of disability by International Classification of functioning, Disability and health (ICF) referred by Cantrell, 2006

Impact of Parkinson Disease

Ac@vi@es limita@on

•  Ac@vi@es of Daily Living (ADL) eg ea@ng, grooming, changing posi@on (Cantrell, 2008)

Biological Impairment

Social Consequences Impact Subjec7ve Wellbeing

(Isola7on & Withdrawal)

Psychological Consequences

Par@cipa@on Restric@ons

•  Interpersonal, domes@c, voca@onal and avoca@onal ac@vi@es, ability to maintain general independence (Cantrell 2008)

•  depression and anxiety (Simpson, Haines et al. 2006) •  perceived lack of self-‐efficacy, •  perceived loss of control over life in general, •  inability to engage in interests, •  embarrassment over PD symptoms, •  concern for the future, and •  concern about becoming a burden to others (Oehlberg, Barg et al. 2008)

Impact of Parkinson Disease on Caregivers •  •  • 

Caring for People with PD can be challenging. Caregiver burden is oSen conceptualised as a subjec@ve feeling of stress or strain (Pearlin et al. 1990) that can affect physical health, psychosocial well-‐ being and financial status (George & Gwyther 1986). Care giving can have nega@ve impact on the caregiver’s physical, psychological and social wellbeing (Davely et al 2004).

Impact of Parkinson Disease on Caregivers •  •  •  • 

A recent study on caregivers of people with PD in Singapore (n=21) indicated that stress and guilt were the most common emo@ons experienced (Tan, S. B., A. F. Williams, et al. 2012). Caregiving imposed restric@on to lifestyle; stress of caregiving leS them physically and emo@onally drained. Guilt was commonly felt by caregivers; felt that they should always be there. Beyond the physical impairment brought on by the disease on its pa@ents, the progressive degenera@on can impose challenges on the physical, psychological and social wellbeing of both pa@ents and their caregivers.

Causes of caregiver stress: •  the sudden change of role or role reversal, •  a lack of support from family members and friends, •  they themselves not knowing how to reduce their stress of care-‐giving, •  not knowing how to establish a con@ngency plan or having necessary coping skills.

Project Ques7on Challenges faced by Individuals with PD and their caregivers

Roles of the Arts

Impact Subjec7ve Wellbeing

Guiding theoretical Concepts: Arts in Context of Health •  A dis7nc7on: Disease and Illness (Eisenburg 1997) •  Iden7ty and illness (Kelly and Millward 2004) •  Chronic Illness as biographic disrup7on (Bury 1982)

Guiding theore7cal Concepts: Arts in Context of Health A dis7nc7on: Disease and Illness

According to Eisenberg (1977): •  diseases are “abnormali@es in the structure and func@on of body organs and systems” diagnose and treated by physicians. •  Illnesses are “experiences of disvalued changes in states of being and in social func@on” which refer us to the psycho-‐sociological experience of disease.

Guiding theore7cal Concepts: Arts in Context of Health Iden7ty and illness (Kelly and Millward 2004)

•  Self and iden@ty gain salience in the course of chronic illness. •  The physicality of the body is important for self and iden@ty because it is inextricably associated with self and with iden@ty; biological realm of the physical body prompts this process. •  Bodily characteris@c are part of what individual perceive themselves to be and influence the way in which cogni@ve thought by self and by others are configured. •  Illness has the poten@al to fracture both previously held self concep@ons and percep@ons that others might hold of individuals and this is likely to be par@cularly salient in forms of prolonged chronic illness, as opposed to flee@ng episodes of acute illness.

Guiding theoretical Concepts: Arts in Context of Health Chronic Illness as biographic disrup7on (Bury 1982)

•  Illness, and especially chronic illness, is precisely that kind of experience where structures of everyday life and form of knowledge that underpin them are disrupted. •  Chronic illness involves the recogni@on of the world of pain and suffering […] it brings individuals, their families and wider social network face to face with the character of their rela@onships in stark form, disrup@ng normal rules of reciprocity and mutual support […]expecta@on and plans that individual holds for the future has to be re-‐examined. •  Withdrawal from social rela@onships and growing social isola@on.

Approach Crea7ve Paperclay workshop (6Wk Introductory Level Program) Objectives: Discovery, Learning, Collaboration and socialization Complexity of project (Visual Literacy) Easy

Challenging

Wk 1-‐2

Wk 3-‐4

Wk 5-‐6:

Project 1:Garden Project

Project 2: Tulips Project

Project 3: Rabbit Project

(Exploratory & Familiariza1on )

• ‘Warm Up’ session • Familiarizing with clay • Introduc@on to acrylic colour.

(2D Relief)

•  •  • 

Project 1: Show and tell Demonstra@on and Crea@ng of tulips relief pieces Colouring artwork

(3D Form)

•  •  •  • 

Project 2: Show and tell Demonstra@on and Crea@on of rabbit pieces Colouring artwork Project 3: Show and tell

Approach •  •  •  •  •  •  •  • 

Collaborated with Parkinson’s Disease Society Singapore (PDSS), supported by MOE Academic Research grant (Tier 1). Offer a 6 weeks crea@ve clay project, that targets at Couples (individuals with PD and primary caregiver who could either be spouse or domes@c aides) Staffs of PDSS assisted in publicizing and recrui@ng par@cipants who fits the profile. 10 Pairs of par@cipants were recruited for the purpose of this study. All par@cipants were briefed and signed a consent form. NTU Ins@tu@onal Review Board review. 6 June – 18 July 2012. The following tools were administered: •  Ques@onnaire on Program (Week 3 & 6) •  PDQ8 (Week 0,3,6,10) •  Non-‐motor symptoms of Parkinson’s Disease (Week 0,3,6,10) •  Well-‐being Inventory (WBI) (Week 0,3,6,10) •  Caregiver burden Ques@onnaire (Week 0,3,6,10)

Outcomes and Observa7ons Wk 1-‐2 Project 1: Garden Project (Exploratory & Familiariza1on) Level of complexity: Easy

Outcomes and Observa7ons Wk 1-‐2 Project 1: Garden Project (Exploratory & Familiariza1on) Level of complexity: Easy

Outcomes and Observa7ons Wk 1-‐2

Project 1: Garden Project (Exploratory & Familiariza1on) Level of complexity: Easy

Outcomes and Observa7ons Wk 3-‐4: Project 2: Tulips Project (2D Relief)

Task: Crea*ng awareness for The Parkinson’s tulips. Par*cipants were asked to consider the numbers of tulips they wish and imagine the world where the tulips were located.

Outcomes and Observa7ons Wk 3-‐4 Project 2: Tulips Project (2D Relief)

“One tulips held in hand to be offered for someone. One to show exclusivity. A sign of apprecia@on” -‐Husband & Wife Team


“2 bright yellow tulips against blue background. The dark & light tones of the leaves represent the interplay of shades and bright light….This artwork placed in the living room will be viewed by visitors and enjoyed by family members…can associate the tulips with my medical condi@on. However, these yellow tulips will brighten my day!” -‐Husband & Wife Team

Outcomes and Observa7ons Wk 3-‐4: Tulips Project (2D Relief)

“There are two tulips I a vase placed on a window sill in a living room. We are a couple doing things together. The tulips placed near the windows will ler us have some air and free of worries. The vase with a heart mo@f represents unity.” -‐Husband & Wife Team





Outcomes and Observa7ons Wk 5-‐6 Project 3: Rabbit Project (3D Form)

Task: Instruc*ons and Demonstra*on followed by asking Par*cipants to create rabbit of their choice.


“2 Rabbits represen@ng husband and wife, they are looking at each other[…] very much in love.” -‐Husband & Wife Team


“2 standing rabbits, happy can speak while standing up, talking to each other […] couple […] can talk to each other.” -‐Husband & Wife Team



“The rabbits represent the old man and the other is a hare […]They are like a couple bickering. Hare making old man sad. ” -‐Husband & Wife Team


Ques7onnaires on Program 5 point Likert-‐Scale Strongly Agree (SA), Agree(A), Neutral(N), Disagree(D), Strongly Disagree(SD) 1)  I am learning new skills and ideas from this workshop. 2)  I enjoy the sense of discovery and play encouraged by the workshop. 3)  I enjoy the opportunity to socialize with other par7cipants through the workshop. 4)  The workshop enables me to interact and engage with my caregiver or the person that I am caring for in a new way. 5)  I enjoy working together with my caregiver or the person that I am caring for on the art pieces. 6)  This workshop provides a focus and helps me in taking things off my mind. 7)  I find myself feeling more relax at the end of each workshop. 8)  I find the feel and texture of paper clay relaxing. 9)  The workshop has given me an idea on the things I can fill my life with. 10)  I intend to explore paper clay on my own a9er this workshop has ended.

Ques7onnaires on Program Additional Question on Week 6 Which are the project you enjoyed? You can 7ck more than one op7on. ___Assignment 1: Garden ___Assignment 2: Tulip ___Assignment 3: Rabbit

If you were to rank the project in terms of your favourite what would they be? (1 -‐ being the most favourite , 3 -‐ Being the least favourite) Assignment 1-‐ Garden: ___ Assignment 2-‐ Tulips: ___ Assignment 3-‐ Rabbit: ___

Any reasons for this order in preference (Nature of the work-‐ 2D/3D, ease of grasping and gerng into the project):

How would you rate the quality of instruc7on by the facilitator? Excellent…..Good….neutral…..Poor….Very Poor Comment (if any):

How would you rate your overall experience of this workshop? Greatly Enjoy………Enjoy……Neutral……Did not enjoy…..Greatly did not enjoy

Outcomes and Observa7ons Ques7onnaire administered on Week 3

SA

A

N

D

Q1: I am learning new skills and ideas from this workshop.

5 5

4

2

1

1

Q2: I enjoy the sense of discovery and play encouraged by the workshop.

5 3

4

4

1

1

Q3: I enjoy the opportunity to socialize with other 4 4 par7cipants through the workshop.

5

4

1

Q4: The workshop enables me to interact and engage with my caregiver or the person that I am caring for in a new way.

2 4

7

4

Q5: I enjoy working together with my caregiver or 4 4 the person that I am caring for on the art pieces.

5

3 1

Q6: This workshop provides a focus and helps me in taking things off my mind.

4 5

5

2

*Q7: I find myself feeling more relax at the end of each workshop

4 2

4

2

SD

1

1

1 2

2

1

Absence: 1 Patient, 1 Caregiver *Incomplete form Q7 onwards: 1 Patient, 2 Caregivers

Outcomes and Observa7ons SA

A

N

D

*Q8: I find the feel and texture of paper clay relaxing.

4 2

3

3 1

1

1

*Q9: The workshop has given me an idea on the things I can fill my life with.

3 2

4

3 1

1

1

*Q10: I intend to explore paper clay on my own a9er this workshop has ended.

2 2

5

2 1

2

1

SD

Comments: •  “To Occupy Time.” – par@cipa@ng spouse •  “Because it can bring the brain more effec@ve in thinking.” – par@cipant with PD •  “I can create things I like and it is fun to do so.” – par@cipants with PD •  “I can work with my [husband] to create more work to display around the house.” – par@cipa@ng spouse •  “Occupy my mind, relaxing and I like the texture of clay.” – Par@cipants with PD •  “I like craS and I enjoy doing clay with [my employer] so that she is less depressed.” – par@cipa@ng domes@c aide

Absence: 1 Patient, 1 Caregiver *Incomplete form Q7 onwards: 1 Patient, 2 Caregivers

Outcomes and Observa7ons Ques7onnaire administered on Week 6

SA

A

N

Q1: I am learning new skills and ideas from this workshop.

3 3

7

7

Q2: I enjoy the sense of discovery and play encouraged by the workshop.

4 3

6

7

Q3: I enjoy the opportunity to socialize with other 4 3 par7cipants through the workshop.

6

7

Q4: The workshop enables me to interact and engage with my caregiver or the person that I am caring for in a new way.

3 3

7

7

Q5: I enjoy working together with my caregiver or 3 3 the person that I am caring for on the art pieces.

7

6

1

Q6: This workshop provides a focus and helps me in taking things off my mind.

4 4

6

4

2

Q7: I find myself feeling more relax at the end of each workshop

1 2

9

6

2

D

SD

Outcomes and Observa7ons SA

A

N

Q8: I find the feel and texture of paper clay relaxing.

1 1

8

8 1

1

Q9: The workshop has given me an idea on the things I can fill my life with.

2 4

7

4 1

2

Q10: I intend to explore paper clay on my own a9er this workshop has ended.

2 4

5

3 1

3

D

2

SD

Outcomes and Observa7ons

Sense of Self-‐Discovery

Enjoyment

Sense of Challenge

Crea7ve Clay workshop

Therapeu7c

Socializa7on





Discussions

•  Overall posi@ve experience for both pa@ents and caregivers. •  Pa@ents and Caregivers agreed in general that the workshop enabled them to learn new skills and idea. •  Pa@ents and caregivers have expressed in general that the workshop enable them to engage with each other in a new way. •  There is a general sense of enjoyment amongst pa@ents and caregivers for in being able to work with together on their art pieces. •  Traveling and mobility challenges.

Discussions Sense of Self-Discovery/ Learning/ Challenge

•  “Helped me realized [the] crea@ve and ar@s@c side of self. Art is possible”

– Par@cipa@ng spouse

•  “Should do again, very interes@ng and fun. Learnt new things. Revived my interest in the art again; I started pain@ng”

– Par@cipant with PD

•  “For major projects like the rabbit, more @me should be allocated to make it more enriching.”


•  “Because it can bring the brain more effec@ve in thinking”


•  “The rabbit is more challenging; like challenge”


Discussions Enjoyment •  “I can create things I like and it is fun to do so.”


•  “Want to create more things”


•  “Hope that the workshop can con@nue.”


•  Pass @me and easy for elderly.


•  “I like craS and I enjoy doing clay with [my employer], so she is less depressed.”

-‐Par@cipa@ng Domes@c Aide

Discussions Therapeutic

•  “Fingers more flexible.” •  “Easy and relaxing.”

–Par@cipant with PD


•  “It’s very relaxing mind and exercise for my fingers and help me to focus on work that I had done.”

–Par@cipa@ng Domes@c Aide

•  “The mind works beter when working on clay.”

– Par@cipants with PD

Discussions Socialization •  “Well done, Thanks for everything. At the very end of class me and my mom [caregiver’s employer] really enjoying doing work together.”

– Par@cipa@ng Domes@c Aide

•  “Amount of interac@on is very high among par@cipants and facilitators”


•  “I can work with [my husband] to create more work to display around the house”

-‐  Par@cipa@ng spouse

Discussions

•  It appears that pa@ents where more willing to pursue the ac@vi@es than most of the caregivers. •  The number of pa@ents who expressed interest to further pursue the ac@vi@es is more than caregivers; they spread largely over SA to A, while Caregivers’ responses are distributed across SA to N.

Conclusions •  Workshop offers learning opportunity for pa@ents and caregivers. •  Par@cipants enjoyed the sense of play and discovery encouraged by the workshop. •  Enjoyed socializing with other par@cipants. •  Pa@ents and Caregivers felt the workshop enabled them to engage and interact with each other in a new way; and that they enjoyed working with each other on the art work. •  Pa@ents and Caregivers felt workshop provide them idea to occupy themselves with, but responses were split when asked if they would further pursue the ac@vity independently beyond the workshop. Limita7on and recommenda7on of project •  Lacks deep interview to beter understand some issues (eg. Change in response by pa@ents and caregivers, uncertainty and concerns to con@nue exploring clay independent of workshop) •  Co-‐rela@on analysis between disease severity and interest/ ability to par@cipate in art ac@vity (eg. Physical limita@on, travel). •  Longer study to follow up on impact of workshop.

End of Presenta7on Thank You Michael Tan [email protected]