More About Holistic Wellbeing
“Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
The World Health Organisation (WHO), 05 August 2020.
This is a welcome approach that is equal for everyone and identifies the multiple dimensions of wellbeing i.e. physical, psychological, social AND the spiritual aspects of human existence. This positive approach is central to our support service and one of the reasons why we do, what we do.
A brain tumour diagnosis in a child can have a central negative impact on the life of their family and cause an outward ripple effect on other aspects of their wellbeing. The lack of holistic wellbeing support available to Dannie and her family at the point of her diagnosis, made a devastating experience more traumatic and overwhelming for her family.
The JPSM, explains that if good palliative care is delivered early, it can improve quality of life and may positively influence the course of the illness. Therefore, whilst medical care continues to primarily treat and relieve the physical suffering and medical needs of the child; identifying and addressing the holistic needs and wellbeing priorities of the child and family early, is an additional effort that can help counter this negative ripple effect early. It can support issues beyond physical symptoms and provide a complementary team approach that offers children diagnosed with brain tumours and their families to receive better longer term support. This is the solution the DLF is offering.
The DLF wants to offer more hope to families and a support service that can help them learn how to validate and nurture their important wellbeing priorities in a positive and healthy manner.
Human beings are complex creatures that exist in an interconnected state of mind, body and spirit. The health of these three dimensions can affect how well we relate to our environment, engage with other people, carry out activities, manage our inner thoughts, emotions and our complete existence.
Emotional wellbeing is about how we feel. Emotions are powerful experiences or feelings that connect the mind and body, e.g. love, hate, joy, anger, pain, self esteem, happiness etc. These complex responses or feelings can become stronger or weaker by what happens to and around us. For example, a person can listen to music or watch a movie that can stir feelings of sadness, joy and fear all at once. Shock is a type of emotion that can affect the body and the mind.
Psychological (mind) shock, is caused by a traumatic event and can occur when a child, their family or carer receives the news of the diagnosis of a serious illness such as a brain tumour in a child. How, when and where such life changing news is delivered, can make all the difference to that family's experience. This news can be very difficult and overwhelming to process. This can be connected with the traditional and cultural beliefs that guide how we live. The traditional expectation of life in any family, is for a child to surpass their parent's legacy in health, wealth and life. This news immediately suggests an interruption, however temporary, to this plan or process. Psychologically, the mind can perceive this as a 'threat' and stir up strong emotions like shock, denial, anger as a protective response. Each person behaves and responds differently to psychological shock, therefore it is difficult to determine or place a time frame on how long an emotional response should last in a person. However, clinical psychologists, clinical psychiatrists and educational psychologists are often part of the Multi-disciplinary Team (MDT) around the child diagnosed with a brain tumour and can help the child and their family come to terms with some of the emotional responses they may experience.
Palliative care involves the whole person and the recent definitions of Palliative Care for children by The WHO,
Together for Short Lives,
The Brain Tumour Charity,
Marie Curie,
The BMJ, JPSM, consider a holistic approach to care & wellbeing, as the best way forward in realising better palliative care for children with
life-limiting & life-threatening conditions
and their families. Our trained
psychological and wellbeing support team
are available and can help our families through person-centred approaches to work through these strong emotional responses. We want to help families identify and validate their emotional responses, equip them with helpful tools that can teach them how to nurture the positive emotional responses and break free from the negative harmful emotional responses.
Life is lived in a cycle of changing seasons and spirituality is a strong part of our emotional, physical and mental connection to this life. It is easy to invest time, energy and personal resources in nurturing and developing our physical, emotional and mental wellbeing, and even easier to neglect this fundamental part of human existence and its contribution to our complete wellbeing.
Spiritual wellbeing is a deeply personal dimension of wellbeing that means different things to different people. It relates to our sense of meaning-of-life, our purpose (why we are here on earth), our fundamental values, our connection to something bigger, our sense of inner peace etc. When when a child or their family receives the difficult news of a brain tumour diagnosis, life can feel like be an indiscriminate lottery, over which they have little control. Spirituality can either be positive or negative but creating a safe space for the healthy expression of spirituality for that family, can have a strong positive influence on the course of that child's illness and how well the family responds to their circumstances.
Spiritual wellbeing can be connected to a specific religion but does not mean religion. Essentially, a person can be spiritual without connection to a religious institution or be religious without any connection to spirituality. Whilst spiritual wellbeing can be reached through religion, it is broader and involves learning to be kind, less judgemental, more grateful, compassionate and forgiving. It is a journey of deeper discovery meaning and purpose. Christians and People of Other Faiths place their trust in an Omnipotent, Benevolent and Life-giving God. The Bible for example, teaches that humans are spiritual beings that have a human existence (Gen 1:26 & John 4:24). Walking in faith is easier when plans work out, good fortune prevails and when it feels as if prayers are being answered. The opposite happens when the seasons of life change and a family receives the terrible news of a brain tumour diagnosis. Doubt, unbelief and faith becomes challenged. Unanswered questions can increase in strength even for the most seasoned person of faith. If left unaddressed, these unanswered questions, can place the family at greater risk of emotional or mental trauma. This is where professional skilled intervention is needful. Our chaplaincy service and partnership with St Matthew's Church provides the DLF with skilled Christian leaders who can offer Christian counsel to support Christian families through these difficult experiences. Our skilled spiritual leaders are also trained to offer support to people of no faith & help address the existential questions that may arise through this journey.
Spiritual wellbeing practitioners consider spiritual wellbeing as the primary coping method in healing and recovery. Christian worship is an expression of spirituality which can offer a tremendous healing experience during a period of health crisis. A person chooses their own personal journey of discovery, to find out what is important in their life as well as how they fit into this life picture. From Christian worship, rites, rituals and practices to non-denominational practices of finding inner peace and tranquillity through meditation, reflection, music or nature; spirituality and faith can provide an opportunity to detach from circumstances and observe life with clarity and integrity.
This is the DLF approach.
We recognise the benefits of creating a safe space for children diagnosed with brain tumours and their families to present and explore the tough questions as they journey through. Our
spiritual wellbeing experts are trained up to post-graduate level and have strong professional experience of working with all people of Christian, other and no faith.
The mind and the body are connected. Physical Wellbeing involves taking care of the body and is a powerful first step towards mental and emotional wellbeing.
Sleep quality, stress management, physical activity, nutrition, diet and lifestyle all play an important role in achieving complete and total physical wellbeing. When a child is diagnosed with a brain tumour, life changes permanently and adjusting to this new life can be daunting for family carers.
Our registered nutritionist and lifestyle coach is available to support our families with tailored advice to help them learn what, how and when to eat the right types of foods.
According to Children with Cancer UK, brain tumours have an overall survival rate of over 70% but unlike other cancers, they can introduce permanent disabilities early in the life of a child. Some children loose major skills, sensory abilities and develop Special Educational Needs & Disabilities (SEND) very quickly. These are very important physical changes in the child and can be a trying experience for any family. Many of our families have told us of their struggles in knowing how to care for their children and how to find help with these new disabilities. The DLF approach to holistic wellbeing support includes offering our families support with local authority SEND provisions to help their child adjust to their new SEND and circumstances and access equal learning opportunities.
Our Advocacy service is available to support our children and the families who may struggle with communications challenges and need representation to help them better communicate their emerging needs across to larger organisations.
Many family carers responsible for children diagnosed with brain tumours have to stop working in order to cope with their child's complex medical care or just to be closer to their child at their time of difficulty. In terminal cases the early onset grief and eventual bereavement trauma multiplies and impacts couples, siblings and almost always results to family break-up. Our strategic alliances enable us offer our family carers help with social care, employment and benefits.
Even the smallest increases in physical activity can help improve total health and quality of life. Every person is different, therefore it is important to find the right activity, which is enjoyable and safe for their level of fitness – is essential to sustainability.
Our support service will help our families learn how to adjust to their new environment around them and learn how to carry out their day-to-day activities.
Telephone: (+) 44 (0) 1895 622 547
Mobile: (+) 44 (0) 7760 411 888
Email : enquiries@thedaniellalogunfoundation.org
Website : www.thedaniellalogunfoundation.org
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The Daniella Logun Foundation (DLF).
Registered Charity Number: 1189746 (England).
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