WCRP Forum | March 2013 | Presentation 3

Living With Dignity & HopeA Programme for Caregivers and Individuals Living with Severe Illness(HIV/AIDS, Cancer, TB, Diabetes, Depression)

Background

Sub-Saharan Africa - highest rates of HIV/AIDS – individuals are leaving their bodies in disillusionment, alone, in anguish, with feelings of hopelessness and loss of dignity because of their deep identification of themselves as the body - appears to be failing at a time of illness

Cancer on the increase – affecting every household

TB – 3rd highest in the world in term of TB burden

NSP Strategic Objectives

Addressing structural, social, economic and behavioural factors that drive the HIV and TB prevention epidemics

Preventing new HIV, STI and TB infections

Sustaining health and wellness

Increasing the protection of human rights and improving access to justice

Living with Dignity and Hope Programme

Modular Self Development programme that promotes Inner Leadership and Capacity Building so that individuals can make behavioural choices based on the understanding and experience of their dignity and worthResultant social and individual behavioural change can decrease risk behaviours and together with biomedical and strutural interventions decrease disease burdenI am responsible, We are responsible, SA is taking responsibility

Living with Dignity and Hope Programme

Stigma – How am I responding to stigma and discrimination? The vision I hold of myself dictates the world’s vision of me – I cannot change how others see me but I am in control of how I see myself

Human Rights – If I believe in and claim my right to human dignity , then others will respect this right

Poverty – major contributor to poor health – “poverty of the spirit” based on false external identification – “where there is a feeling of lack there will always be lack”

Valuing my self and worth as a contributing member of society improves adherence thus sustaining health and wellness

Living with Dignity & Hope Experiential programme - originally created with

the aim to support healing and wellbeing for individuals diagnosed with HIV/AIDS and cancer, but has since also been identified to support wider audiences who need wellbeing – be it physically, emotionally or spiritually.

A modular experiential programme, using spiritual tools of listening, creativity, relaxation, visualisation, appreciation, meditation and reflection

Ideally a weekend retreat, alternatively a one day workshop or 5 session seminars

Learning Objectives Self-Awareness – encouraging individuals to

become aware of their subconscious feelings, emotions, attitudes, beliefs and perceptions – so that they can begin to understand themselves, release and let go of pathological thinking patterns that may be aggravating their disease, and begin to heal with understanding

To encourage a balanced healthy physical lifestyle To introduce individuals to concepts of reflection,

journaling and self-appreciation necessary for emotional healing

To help individuals re-identify themselves as immortal spiritual beings and reassess their relationship with the Higher Source (which can be challenged during ill health) but which is vital to holistic wellbeing

The Unique Value of this Programme:

A Spiritual Dimension to health and wellbeing, to “Living” with Dignity and HopeAn experiential approach In a healing and nurturing environment where individuals can experience their dignity and worth

Pilot

10/09/11 the Department of Health and the Brahma Kumaris hosted a workshop at White Hall, France for community care givers of the impoverished community of France, Pietermaritzburg, where HIV/AIDS is prevalent

About 24 caregivers attended were very emotional as they acknowledged

negative feelings they had been harbouring for months, some for even a life time!

Pilot Testimonials I have learnt a lot. I have learnt about Who I am? I need

to forgive those who have hurt me and look to and create my future.

I learnt that I choose how I wish to lead my life. Every morning I will pray to God and visualize a healthy healed me. I now understand myself and I have healed.  

I have learnt to understand other people and respect them. I need to apologize to those whom I have hurt and live in harmony with all in my community.

I learnt a lot from this workshop and I wish we have more. I have learnt that no one can take my happiness away. I do have the power to do the things in my life inside of me. I am more than a conqueror – Khanyisile Mkhize

I am now empowered with self knowledge and inner strengths, greater understanding of dealing with emotions. The workshop was most uplifting and I gained an awareness of the power within. I have learnt to deal with negativeness. I am now glowing with inner spiritual light and acknowledge the light in others.

I have learnt that I need to make peace with myself to be healthy, and I need to make peace with others who have made me angry. I have learned to let go of hatred, to forgive and forget. I am unique and I have learnt about whom I am – my inner part is more important than the outer part – Thandi Sithole

I have learnt that I need to make peace with someone to keep away the stress and I must share love and peace. I need to take care of myself to take care of others – Rosemary

I feel free in my heart and now feel like I have dignity and hope in my life and the good spirit to enjoy myself. I am now more self-confident in my feelings; I will share this with others 

I have burnt my hate, my heart is now light and I believe in myself.

My heart was dirty and my heart is clean now and I am happy.

Retreat 25th-27th May 2012

The Brahma Kumaris and Willowton Group held a 2 and a half day retreat of insights and inspirations for facilitators and carers of individuals living with severe illness i.e. HIV/AIDS and Cancer

25 carers and cancer survivors needing healing from all parts and social backgrounds of Pietermaritzburg, the participants included Dr May Mkhize, the first lady of KZN, and Ward Councillors Desmond Nkuna and Numsa, nuns, nurses, teachers, a principal, an old age home nurse manager, 2 pastors, youth leaders, staff from the Society for the Deaf, a physiotherapist and community leader etc.

Testimonials I felt spiritually and emotionally the strongest eight

years ago when I was diagnosed with cancer. I overcame that battle with the love and guidance of God. I thereafter went into remission and got caught up with the physical needs of the world and my life and for the past seven years, I have drifted away spiritually. This retreat was one of the best and most valuable decisions I have made. It has helped me to get connected again, to find tools within myself to start this journey, to centre myself and my thoughts in everyday life. Through meditation I realized that I'm in control of my life. To care and love others, I understand I have to be strong spiritually and emotionally so that I can share the strength with my loved ones. Thank you for taking the time to hold my hand and take me through this journey! – Kumaren Moodley 

This has been a tremendous experience, a powerful tool to empower and understand myself as a soul. This has strengthened my way of looking at life in general and myself in particular. It is also a powerful tool to connect correctly with God. I will continue to empower myself through meditation – Desmond Nkuna

This retreat has truly been an eye opener. I have connected with my emotional and spiritual self and I now see life from a new point of view. I have learnt more about meditation and the power of the spiritual being and this has recharged me – Sithembile Ngubane  

I have learnt that everything starts with me. I have to find peace, love and joy inside so that I can give this out to other people. This will help me a great deal with my personal problems and provide tools to help others especially the children I work with. I have also learnt the wonderful tool of meditation. It will help me to be calm and peaceful inside – Ntombi Mvelase

5 Session Seminars

May and June 2012, the programme had been conducted as part of a 5 session series at Glenwood library every fortnight and there is a group of 15 souls who took deep benefit and eagerly attend each session. A soul who is breast cancer survivor stated that the benefit has been unimaginable for her – she is now so free and content and sleeps better at night and feels so uplifted and positive about herself – whereas before she had been struggling with very low self-esteem and mood.

Work with NGO - PUSH We conducted a series of three 2 day

workshop in June & July for all 90 staff from an NGO called PUSH (Persevere Until Something Happens).

The staff included social workers, psychologists, counsellors and community caregivers who care for individuals living with HIV/AIDS, many of whom were infected with HIV themselves, had been raped, and were living with severe social stressors themselves.

Living with Dignity and Hope in Howick, 21st July 2012 One-day workshop for about 20 caregivers from the

communities around Howick – the participants included counsellors, community caregivers, a pastor and the First Lady Dr Mkhize.

The conversations were very deep and everyone took great benefit from the day. The pastor shared that this programme is much needed at all levels – teachers also need this deep healing.

The participants felt so light and free of the burdens they were carrying, that they remained behind after the workshop wanting to express their deep gratitude and longing that we would have more of such workshops. They expressed that the workshop left them positive and enthusiastic and empowered to look forward to the future, that was in their hands to create! On meeting a participant 2 months later, she shared how since she had chosen to release and let go of all the emotions she had been carrying all her lifetime, she has never felt better and she is now living!

GPH, 17th November 2012

Preparation:Ex-Ward CouncillorLetters of Invite to Local Societies,

temples, churches, CCG and Ward Committee Members, Local media sources

Testimonials The main benefit I take back with me is to

know more about myself, deeply. I enjoyed the session on spiritual wellbeing. I must start to be honest with myself and practice what I preach. I will tell the community about this program and advice the community to be part of this program. The facilitation was excellent. – Puseletso Sithole

I have learnt to leave the past, throughout and to forgive the past. I will discuss with the community all that I have learnt here – Princess (Community Care Giver)

I loved the academic and practical experience of spiritual and emotional healing. I will reinforce my practice to realise myself as unconditional love. I really enjoyed the session on spiritual wellbeing. I will focus on my meditation to cleanse and purify my mind. I will use the tools in my work – Ramesh Ramkumar

I feel well empowered and enriched. I enjoyed the session on emotional and spiritual well being. I will try and empower others in the community using this tool – Rabi Gobind

I take back peace. I really enjoyed the group discussions. I will practice meditation to experience peace – Lenny Chetty

I came to find ways to cope with my husband who has Alzheimer’s since 2009 as I am his main caregiver. I have learnt to keep reminding myself of what a powerful, spiritual and everlasting being each of us is and never to be depressed over my current situations. I enjoy the case senarios. I will look at ways in which I can take this program to the community organisations. I have benefited a great deal – Tulesi Pather

I have learnt to be the detached observer when old hurts surface. I enjoyed the session on spiritual well being. I would love to share these ideas with women who are unhappy in their circumstances – Saaleha Vadachia

Residential Retreat: 25-27 Jan 2013 Global Peace House, Durban

Attended by 30 participants – 17 of which were from the informal settlements of Sims Place, Mt Royale and Mt Moraiye

Some CTGs, Youth ambassadors, community leaders and teachers, nurses, individuals interested in community upliftment

Testimonials

I feel so relaxed – my body feels healthier, the pain in my leg is gone, and I am motivated, it is not important what others think of me but how I see myself – If I take care of myself first and know who I am and understand my worth and my dignity, I will be able to take care of others – Putsoletso Sithole – President of ANC Womens League, Ward 34

International

Costa Rica- young cancer sufferers accepting chemotherapy better- HIV/AIDS patients taking deep benefit

Poland

Modules - Aims Self-Awareness: To allow the participant to

become aware of their thoughts, feelings, words and actions as a consequence of the journey through illness

To enable the participant to release and let go of their feelings. Possible tools: Dialogue and Sharing (the listener practices active listening, understanding that the sharing is not about them, but it is about the one being listened to), SOS, visualisation and meditation.

Using appreciative enquiry to enable the participant to see the impact of their thoughts and feelings, and consequently to understand that they can choose to think differently