1. Plenary 3 Treating the whole Person: Survivor’s Perspective Ranjit Kaur Malaysia 16 th RRI Conference Taipei, 11 November 2011

2. Disease vs the Person Treating the Disease vs Treating the Person Individual - Physical - Intellectual - Emotional ✓ - Spiritual ✓ Social and Environmental factors can influence the health and life of the individual.

3. Changes and Effects between the Individual & the Social & Environmental Factors Interacting Influencing one another, and Interdependent

4. Different Aspects of Treatment Decision Making & Planning Communication with Health Care Providers Stages of Grief – psychological support Symptom Management Sense of Personal Control Financial Issues Sexuality and Intimacy Issues Spiritual Issues Social Support - Tapping of Support Networks Impact of Illness on loved one, Family & Friends

5. Mind-Body Connection State of mental and emotional wellbeing No separation exists between the mind and body. Body feeds the mind; the mind feeds the body - Thoughts and Feelings - Beliefs and Attitudes Mind-body approaches strengthen the mental and emotional inner life, supporting health and healing.

6. Doctor’s perspective - Surgical Procedure Patient’s perspective - Mutilation of Body and Soul, Loss of Body image Mastectomy

7. Support: Emotional and Social Addressing and dealing with issues at: Individual Level Emotional - Fears and Concerns, Coping, Self-confidence, Body image, Sexuality Personal role and goal Social Level Stigma / Prejudice/Discrimination Social isolation and rejection Relationships and Family issues Insurance and employment issues

8. Mills (2005) “…. culture is neither the biological features of race nor the nationality or ethnicity of individuals, but as the customs, norms, values and styles of living that a group of people share.”

9. Recent studies Cancer is more than a biological disease Cultural factors are involved at every stage in the journey through cancer, from prevention to end-of-life Cultural themes in relation to cancer: The disparity of rates of cancer in different ethnic groups Culture and screening Breaking bad news and communication Cultural variations in emotional response to cancer Cultural variability in treatment & thoughts on prognosis

10. Burklow (USA) “……. Asian women ……. they do get treatment, more advanced stages. They focus on curative rather than preventive measures, and ……. frequently exhaust folk medicine first before seeking assistance from a Western medical professional.………..”

11. Levine et al (2005), Cain et al (1986) “Psychosocial support can reduce post traumatic stress symptoms which are prevalent in breast cancer” Rehse and Pukrop (2003), Keller (1998), Spiegel (1994), Levine et al (2005), Cain et al (1986) “Psychosocial support can improve the QOL for cancer patients.”

12. Impact on length of life? Smedlund & Ringdal, 2004 “There is no definite conclusion on whether psychosocial support can prolong cancer survival”

13. Yam (Australia) Muslims Illness -Predestined by Allah (almighty) -Acceptance of illness, fate & suffering, ….. shed sins and elevate status in the next realm of existence -Prayer - main means to reduce their suffering -Individual illness - family matter. Family members prefer to keep diagnosis within family to protect the wellbeing of the individual Treatment options -Spiritual healing & traditional healing practices, rituals and folk medicine, modern medicine,

14. Sotnik P. & Hasnain R. (1998). Hindus & Buddhists Life- threatening disease caused by: -Sins committed in previous life by parents, ancestors, family or individual - Mother committed the sin during pregnancy - Belief in Karma (destiny, based on one’s actions) - God’s will - The person is cursed with cancer

15. Wang (2002) Breast cancer in Chinese women -Private people, prefer to deal with issues in silence -"Save face" – not to admit weakness - sign of trouble, disrespect, and evilness -Belief - luck comes from ancestors -Suffering – reason / duty to pay for sins of fathers carry the additional cultural burden

16. What are the values by which you live? What is your source or Inspiration in Life? What facilitates a sense of a deep self in you? At what point will you achieve your full potential in life?

17. Managing Spiritual Health Meaning of life and living the moment Religious belief Meditation Relaxation

18. The Power of Hope When there is no more hope for long life, there is hope for other issues. Lao Tsu “What the caterpillar calls the end of life, the world calls it a butterfly”

19. Hope grows with: Presence of meaningful relationship Ability to use humour – look at ourselves in a lighthearted way Clear goals – e.g., hope to have a good meal today (may not be hope for life) Courage and determination - like being swallowed by a monster – you got to go through it Able to recall positive memories

20. Michael Kearney, 2000 “A place of healing: working with suffering in living and dying ” Alternative approach to caring for sick and dying people Based on the idea of supporting healing rather than attempting to cure Contact with the deep self and as a source of healing. Analogies between curing and healing approaches to medicine including: - Classic vs Modern Physics, - Superficial vs Deep Psychology - Hippocratic versus Asklepian Sometimes sick people need less intervention from outside and more support in finding resolution from within.

21. Physical Environment - Calming, Nurturing -The sound of birds chirping in the morning -The sight of animals and their young ones grazing in the fields -Greenery – plants, flowers and trees -An aquarium of fish -Colours and Light -Smell -Arrangement of furniture

22. Disease vs the Person Treating the Person in all aspects, namely: - Physical - Intellectual - Emotional - Spiritual

23. Breast Cancer Welfare Association Malaysia BCWA 5 th Floor Bangunan Sultan Salahuddin Abdul Aziz Shah 16 Jalan Utara, 46200 Petaling Jaya Tel: 03 79540133 Fax: 03 79540122 www.breastcancer.org.my ranjit@breatcancer.org.my