SOME THOUGHTS FROM CYNTHIA
When we are faced with the unexpected in our lives, what do we do to keep some form of balance when everything around us no longer feels the same?
Every day I meet with people who are faced with trying to make meaning out of the unforeseen circumstances they are experiencing. Life is full of unanticipated situations that have us adapting and transitioning to new positions; it is rare to go through life without any ‘bruising’.
Many of the children and families I meet are adjusting to a life changing event. There is a common aspect that I witness while supporting families; and that is resiliency. Finding a way ‘forward’ in the midst of change is a real skill. How we respond to what is happening to us is important to how we are going to cope with the adjustments needed. This does not happen immediately, when a life altering situation occurs, we are often numb and in shock. But once we move out of the shock phase our natural tendency is to try to adjust and make meaning.
Norman Garmezy, 1993, stated, “Resiliency is what happens when one regains functioning after an adversity”. I am constantly amazed at the strength and courage that children and families have in finding the ability to ‘bounce back’ and keep going adjusting to the ongoing stresses and crisis’s that occur due to complexity of health issues and grief and loss.
Our values, philosophies, culture, traditions and past life experiences help to shape our ability to adjust to different situations. Our experiences of life and our interpretation of those experiences give meaning to our experiences of the world – making sense gives meaning to the experience (White, 2003). It can often be difficult to make sense when life as you know it has been changed forever.
A lot has been written on building resilience, Patterson, 1991, has identified nine aspects of resilient families living with a child with a chronic illness. These are
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Balancing the illness with other family needs
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Maintaining clear family boundaries
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Developing communication competence
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Attributing positive meanings to the situation
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Maintaining family flexibility
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Maintaining a commitment to the family as a unit,
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Engaging in active coping efforts
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Maintaining social integration
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Developing collaborative relationships with professionals (Patterson, 1991).
Support from family, friends, community groups and health professionals can help with the transitions of change. As individuals it is important to remember the basics of what will keep us healthy, such as eating well, drinking fluids, exercising and maintaining relationships with people who add value to our lives.
To ‘keep standing’ in the face of adversity is something that will take all of our strength, courage, ability and perseverance. Life will continue to throw up challenges, and what I have learnt from the children and families I support, is, it is important to not ‘give up’, that resiliency grows and develops, and a strength of character is born – this is not asked for, but is in fact the outcome of the adjustments and transitions that come with grief and loss and health issues.
Ehara taku toa I te toa takitahi engari he toa takimanoe
My strength is not mine alone but that of many.
Cynthia’s Blog 31 July 2011
Winter can be so isolating for families who live with children with compromised health needs. There are many viruses and bacterial infections that can put the children at risk of a life-threatening event.
While many of the children who live with chronic and long term health conditions may be hospitalised over this winter season, there are many other families who are staying at home trying to minimise the risk for their children. Other families are making the decision to home school over the winter period for their children who are most vulnerable.
The winter months have a huge impact on families who have children with health needs. I want to acknowledge the cost this has on the family. Resiliency is stretched when a child is in hospital and parents are trying to juggle and balance how they stay and support their sick child in the hospital whilst taking care of their other children. The siblings often have to forgo their own interests at this time as parents are not able to ‘stretch’ to continue with extra curriculum activities outside of school. The time, energy and sheer practicalities of daily living at this time can be exhausting.
Some of the families True Colours supports have the sick child’s room set up to enable strict monitoring and restriction of who goes in to be with them in order to reduce contact with infections or viruses. While this is necessary at times this creates barriers between siblings and friends and extended family.
Most people struggle at times with the weather and the cold dreariness of winter, but for families of seriously ill children it is hugely impactful and can be life altering.
I want to honour the commitment and care that parents give to their children, living with such adversity. And I certainly want to acknowledge the sacrifice that siblings also make at this time of the year.
The psychological fall out of this, is that self-esteem and confidence can be eroded, exhaustion and sleep deprivation is evident in the way family members relate to each other. Everything feels harder. Resentments and frustrations are more evident when everyone is stretched to their capacity.
What would make the difference through these months?… Again it is the little things that count. Whether it is delivering a meal, taking a sibling out for a treat or making sure they have some extra attention to help redress their experience of missing out. It is mowing the lawn, going to the supermarket and assistance with the day to day functioning of a family’s life in any way that may offer support. To ‘be’ there for someone else when there is little that can be done to change the circumstances is indeed something that can be deeply appreciated.
This blog is dedicated to all those that find the winter months difficult, whatever the reason. And I think particularly of those children, young people and families who understand the fragility of life and strive to make each day a positive one.
Cynthia’s Blog 27 June 2011
I have just been reading an article called “The symptom profile and experience of children with rare life-limiting illnesses: Perspectives of their families and key health professionals” (Forbat, Malcolm, Anderson, Adams, Gibson, Hain & Morley, 2011).
As I read it I am thinking of the many children and families I have cared for over the years; the content of this article is familiar to some of the conversations and experiences I have had.
The article highlights that parents become the experts of their child’s illness; “this expertise is developed through necessity, often, rather than choice”. Parents have shared with me that the medical team and health professionals often look to them for advice in regard to their child’s condition, particularly those illnesses that are rare. This is unsettling for the family as the responsibility sits heavily with them when they would prefer to be gaining expert advice from those responsible for the treatment and care of their child.
The impact on the wider family is recognised in this article, with siblings voicing the love and compassion for their brother or sister and frustration at those who judge people with disabilities. In this particular study siblings stated that they felt they may know more about their brother or sister’s condition than their parents realised. “This may be because siblings and parents try and protect each other by limiting how much they talk to each other about the ill child’s condition. They also spoke of feeling isolated, and the limitations in the social experiences which stemmed from the needs of the ill child”.
“Siblings were often managing a range of complex emotions, at home, and at school and were very aware of how worrying feelings could echo around the wider family system”.
Parents often ask the team at True Colours how much information should be shared with siblings or with the sick child themselves about the condition, treatment or prognosis of the illness. We endorse always being honest, but to keep the language and information simple and developmentally appropriate. Often children require a small piece of information, and then they can be encouraged to ask questions they may have about this. When children ask questions it is good to clarify what is being asked, and then to keep the answer simple and honest. It is good to remind ourselves that adults see the ‘big picture’ of what is happening or what the future may hold, but children tend to live in the moment and are attending to what is happening for them in the here and now.
Children will be led by your own responses, emotions and how you are in ‘the moment’. To give children the opportunity to talk or express how they are feeling about the illness, whether that is the sick child, or sibling, is essential in ‘listening to hear’ what is important and therefore upholding good communication links with your children.
There is no doubt that a child’s serious illness impacts on all of the family and that challenging relational dynamics arise at times due to the vigilance and energy required to care for the child who is sick.
With this in mind it is essential to have health professionals who provide support that is beneficial and that helps ‘ease’ the load on the family. It is hugely important to me in doing the evaluation of True Colours organisation to find out whether this service is actually meeting families needs when there is a sick child. Hearing from children and parents themselves enables us to continue to scope the service provision on what is actually needed, rather than assumed. If you would like to read the above article, you can go to www.cancercare.stir.ac.uk.
May 2011
As we celebrate the seventh anniversary of True Colours, we thank all those that have supported us over this time. There have been many individuals, businesses, sponsors and organisations that have contributed to making a positive difference for seriously children and their families. To date, this support has enabled True Colours to support 752 families whose lives are impacted on by serious health issues. This number validates the importance of such a service.
As I remember the many children and young people who have had care from True Colours, I reflect on what families have shared with me over this time in regard to what they deem to be important.
They have shared that to have care from the time of diagnosis of the serious illness, and following the trajectory of this illness in the challenges that often lie ahead, was central to how well they felt supported throughout the difficult times.
True Colours offers a flexible package of care so that although the core business of the organisation is to care for sick children, young people and their families, we recognise that each family has their own culture, values, supports and way of being. As an organisation it is important to listen to the needs of the families, working in partnership with them, and other providers involved in the care to deliver the best possible service.
True Colours is committed to growing and developing the service to meet the needs of the families, rather than the needs of the organisation.
There will be an opportunity over the next two years for families to have direct feedback by way of focus groups as part of an evaluation that True Colours is undertaking.
By hearing directly from families in regard to service provision and whether their needs have been met, we hope to validate the importance of such a service for funders and referrers. The accountability and credibility of the organisation needs to be transparent. True Colours is a community organisation and we endeavour to practice at the highest standard of care.
To all those who contribute, in whatever way to this valuable work, we thank you. We could not do without you!
30 April 2011
As I continue with my PhD study, I am motivated to keep questioning, challenging and exploring the health care that is currently available.
I have dedicated the last decade to ‘listening to the voice of the child’ and have felt driven to make sure that the children and young people receiving support from True Colours have their voices heard. Of course there are always the ‘systems’ within institutions that are difficult to navigate at times, but True Colours works hard to try and meet the needs of children and young people.
The New Zealand Child Health Strategy (1998) states that, “Children should be seen, heard and have their needs met”. That is a national commitment from government to care for the children of New Zealand. While there is no doubt fantastic care from most health providers, we have a long way to go.
The children’s commissioner of New Zealand believes there are barriers to children being seen, heard and having their needs met in New Zealand. His paper, ‘Seen but not heard: children’s interests, children’s health and public policy’, highlight the barriers to children gaining the care they need. He identified the invisibility of children with their interests carrying very little weight in the political world. Child health appears to have a low priority within the political realm, therefore policy and strategies are not given the status they deserve. Dr John Angus was speaking to the Health Promotion and Policy Research Unit in Otago at the beginning of this month. This is recognised in a number of fields of paediatric health care and there are many who work in this field that are committed to making positive changes.
Therefore I continue to be committed in lobbying for children’s rights, creating avenues for their voices to be heard and having their needs met. At a child and adolescent regional network meeting I attended this week in Hamilton there was an opportunity to address these issues. The Paediatric Society has been engaged by the Ministry to develop clinical networks for children and young people to have a more consistent approach in the services of health care. The leaders in child health services met to highlight the issues and to put forward ideas on improving clinical pathways to make a positive difference for children and young people. There will be five of these planning meetings around the country.
It is important for those of us who work alongside children, young people and their families, to listen to what they feel is important in health care and advocate strongly on this matter. This is another avenue in letting their ‘voices’ be heard.
The children and young people of this country have rights in healthcare services. The Charter of children’s and young people’s rights in health care services (2010) states that, “Every child and young person has a right:
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To consideration of their best interests as the primary concern of all involved in his or her care.
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To express their views, and to be heard and taken seriously.
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To the highest attainable standard of healthcare.
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To respect for themselves as a whole person, as well as respect for their family and the family’s individual characteristics, beliefs. Culture and contexts.
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To be nurtured by their parents and family, and to have family relationships supported by the service in which the child or young person is receiving healthcare.
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To information, in a form that is understandable to them.
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To participate in decision-making and, as appropriate to their capabilities, to make decisions about their care.
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To be kept safe from all forms of harm.
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To have their privacy respected.
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To participate in education, play, creative activities and recreation, even if this is difficult due to their illness or disability.
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To continuity of healthcare, including well-planned care that takes them beyond the paediatric context.
The families that gain support from True Colours work hard to provide the best care for their children who live with serious illness and/or disability. As providers of care it is crucial to make sure we continue to listen to what is important so that we can then provide the highest standard of care possible.
Care provided should always be scoped by what the child, young person and their family state is important when they live with serious illness.
21 March 2011
It appears that the world has turned a little crazy; it is frightening to turn on the radio or TV as we brace ourselves for more bad news. As we continue to think of the people of Christchurch and now Japan I want us to remember the tragedies that may go undetected.
While attending a conference in Auckland last week, I had the opportunity to listen to Sue Bradley remind us of the tragedy of poverty and what this means for the children in NZ let alone in other parts of the world. She is right of course, catastrophic events grab our attention, but actually every day there are smaller catastrophic events that go under our radar.
I know that the families that gain support from True Colours are already mindful of this as they attend to whatever is happening in their lives. Neil Finn has as one of his lyrics, “I could go at any time; there is nothing safe about this life”. The devastation occurring within the world has certainly brought this to our attention.
When we live with complexity it is easy to lose sight of ourselves. We become cautious and uncertain, easily feeling confused. It is particularly so when the world around us feels chaotic and we sense our own helplessness and powerlessness.
Finding balance within these places is the key to maintaining our sustainability and resiliency. Rollo May said, “in human beings, courage is necessary to make being and becoming possible” (cited in Kidd, 1990). Our own beliefs, values and life experiences are challenged time and again. The cutting edge of realness, truth telling and honesty, in the place where there is no room for dishonesty, allows for us to find our fundamental principles of what is important to us as humans responding to each other in times of vulnerability and fragility. If we allow it the helplessness and powerlessness can open us to a place of softness within our core being, and there is learning that comes from within that place. There is an opportunity to know ourselves in a deeper way as we gain insight into what is truly important to us.
Our families have their own culture, history, traditions and values, and our own styles of communication. We have stories shaped over the generations, where dominant beliefs and practices become taken for granted. Events and incidents become the stories that shape our lives. The sharing of these stories is a rich component of communication between each other. The power of this communication underpins all relationships and has the ability to strengthen these associations into strong connections.
It is the quality of our relationships with others in times of chaos or crisis that strengthens the tenuous connections in life, whether that is within our family circle or the world around us. This has been apparent as we watch the humanness of individuals caring for each other in times of catastrophic events.
The paradox of the human spirit is that I am not fully myself till I am recognised in my uniqueness by another… (Richard Hycner, 1995).
Let us stand strong with the vision of hope and be there for one another whether that is emotionally, spiritually or physically, developing our resiliency and courage.
28 February 2011
Our hearts are heavy as we think of the Christchurch people and the devastation and grief that have entered their lives in an earth shattering moment, changing their circumstances forever.
We know and understand about resiliency, strength and courage and it is something I speak of a lot as I see this daily in those that I care for. But it takes energy and huge courage to ‘stand up’ again after the foundation of trust has been shaken to the core, in this case, literally. As the rest of the country stands by feeling helpless and powerless, trying to find ways of sending support in some way, people are beginning to find their own way of surviving this catastrophe.
It is times such as this when New Zealand feels small and we all feel so close to the families and individuals who are living within this crisis. We remember with the rest of the country those that have not survived and send our love and care in positive waves to those that are grieving. Our hearts and spirits reach out in any way we can.
Daily in the media we hear of huge devastation, along with the stories of ‘miracles’ and strength and courage. And amazingly life carries on as we all attend to our acts of daily living.
We know and understand that to enjoy life we have to live fully in each moment. Some of us know well life is not to be taken for granted, it is indeed a gift. Children I have cared for in the past have taught me how to ‘live until you die’. It is something I am remembering at this time as I reflect on the last week, and the horror of mass destruction that we have witnessed as a nation.
We also remember the many people from New Zealand and overseas who are working so hard and giving so tirelessly to help and assist in the recovery and clean up.
We are united as one in our thoughts, prayers, reflections and care.
"The greatest glory in living
lies not in never falling,
but in rising every time we fall.”
Nelson Mandela
31 January 2011
As a new year unfolds there are some of us who are looking ahead with a degree of nervousness as to what it may hold; others of us have an enthusiastic anticipation for what new challenges may lie ahead. Whatever the view, it is a new year, and one that is to be embraced to make each moment count to the best of our ability.
The year started with global tragedies and for some of us, heartbreak has been on a personal level. I do want to acknowledge those that have started the year hurting, grieving and are adjusting to new ways of being.
In listening to what people have shared with me, I am well aware of the apprehension and anxiety of what may lie ahead. The reality is that at times we are going to have to pull on our resources and inner strength to live fully in the moment.
There will also be celebrations along the way. Some of these major achievements, other accomplishments will be the small steps that are worthy to be celebrated and acknowledged. To witness a child who has a major health and disability issue, smile as they listen to some music that has touched their soul, is a moment to be recognised. The energy that has gone into that smile is something that those of us who are close to the child will know and understand - this is a moment to celebrate. But to others, this moment and its significance may have been missed or misunderstood.
Whatever is going on in our lives; we have the potential to shape and scope how we will face the year. The way that we view what lies ahead and how we are in the moments of the day will help charter the path ahead of us.
I want to take my lead from the children and families who know and understand the moments that are to be celebrated and recognised, and who know that whatever comes across our paths, it is our inner strength and resiliency that makes each situation as good as it can be in the circumstances we face.
As I focus on the year ahead, I look forward to the connections that will be made with those I meet. I will endeavour to embrace the ever changing environment around me and the challenges and the celebrations that this will bring. I will try to make each moment count and appreciate the achievements along the way, no matter how big or small. I hope this year brings you all richness of connections in your relationships with others and in whatever you are doing.
22 December 2010
As I write this for the last time for 2010 I am reflecting back and remembering the different experiences of the year. Many will know that this year was a difficult one for the True Colours team as we faced our own grief, loss and health issues. Due to the smallness of the team this had a huge impact. But the support given to us throughout the year has assisted us to ‘keep standing’.
Every time there is a contribution to our organisation from the many different individuals who support True Colours, it means that we are able to sustain doing the work we do with seriously ill children and their families and it is very much appreciated.
I want to honour and acknowledge the children, young people and their families that we have supported this year. I am remembering the different aspects of your lives that you have shared with us due to the many challenges that health issues bring. Your courage, strength, resiliency and advocacy is truly amazing. As we have ‘walked alongside’ you on your different journeys, the team recognises our part is small. The bravery of you the children and young people, and you as families who show such love and devotion in your care is totally inspiring.
I acknowledge that this time of the year brings mixed feelings for many of you as we prepare for the Christmas and New Year holiday season.
To all of you who take the time to read this blog…. I wish for you some gentle restful connected times with family and friends this holiday break. I hope there will be opportunity for refreshed energy and some fun and light moments along the way. I look forward to reconnecting in the New Year.
12 November 2010
We have just had our major fundraiser for the year which will help sustain the organisation and allow us to continue to deliver the quality care required for children and families. This is crucial as True Colours receives no direct government funding.
The True Colours Long Lunch was Annah Stretton's inspiration as she saw the opportunity to give people a fun afternoon of watching the Melbourne Cup whilst having good food, wine and entertainment. The proceeds of this afternoon are then donated to True Colours.
It has become a very popular fundraiser, but requires a lot of organising over the months leading up to it. Diane O’Sullivan (Friends of True Colours Coordinator) took this role over from Annah and has contributed hours of her time behind the scenes working with the ‘Friends of True Colours’ Team, and the sponsors, to create a fantastic day. Deborah Mundy and Brian Hermann have generously donated the gorgeous venue of The Narrows Landing for the last three years, and it is a perfect venue.
There are many key sponsors who help make this day a success. John Barraclough and KPMG this year sponsored the guest speaker, Kerre Woodham, who had us ‘laughing until it hurt’ as she spoke of her life and the marathons she has completed which have inspired so many others. There were also many fantastic items auctioned off, and of course Faye Williamson-Ward’s event ‘Fashion in the Field’ added to the eminence, fun and entertainment. On behalf of the Trust I say a huge thank you to all who contributed in any way to the day! This has been the most successful True Colours Long Lunch we have had to date.
It is a high calibre occasion and the quality of this event fits well with the philosophy of True Colours, which is to ‘give our best’ when working with the children and families we support, to ensure quality of life is enhanced.
Inspirational speaker Barbara Berezowski an Olympian athlete said the following:
“Life is precious because time is short. Whether you are fortunate enough to live to be 100 or not, live each and every day to its fullest. Where there is a hurdle in life…. think your way to find solutions and use your energy to accentuate the positive”.
Having people capture the vision of the True Colours philosophy, embracing it, donating their time, funds and resources to underpin the delivery of care required, is a way of overcoming ‘the hurdles, finding solutions to accentuate the positive’ so that fundraisers like the True Colours Long Lunch have positive benefits for all concerned. Thanks again to all of you who helped make this day the success it was. It was truly awesome, and service delivery to children and families continues because of this event.
20 October 2010
Earlier this month I spoke to a group of women who meet regularly to discuss different aspects of what is important in this life. I was invited to speak to the group about what services True Colours provides for children, young people and their families.
I was again struck by the realisation that people are still very uncomfortable with anybody or anything that is slightly different from their own perspective of what ‘normality’ is.
A comment I frequently hear is, “I am not sure what to say or do that would be appropriate for a family with a child who lives with health issues and disability”. This shows that there are good reasons why families with sick children continue to feel isolated and misunderstood.
I have heard many times that families feel they have joined an exclusive ‘club’ that they had no choice about. This is due to friends and family members distancing themselves or treating them differently because they have a seriously unwell child. We recognise this is because they themselves feel insecure about how to ‘be’ with someone who is ‘different’ to them, but this reinforces the feeling of unwanted ‘exclusiveness’.
Society will continue to feel distress, discomfort and nervousness in regard to children becoming seriously unwell. There is a sense of injustice because, as adults in general, we want to protect our children from anything that may bring harm to them in any way. Therefore parents who live with seriously ill children struggle to gain the support required. It is so important for health professionals to advocate strongly for families, breaking down the barriers and challenges that they face on a daily basis.
One of the roles True Colours has is to advocate for children, young people and their families when working with other health professionals. A further responsibility is that we continue to teach, train and mentor others in how to best meet the needs of families who live with illness and disability. We gain this information by listening to those we care for and learning from their insights.
No one understands what it is like to walk in another’s shoes. But with knowledge, information and a willingness to ‘listen to hear’ what is important for seriously ill children and young people, we are able to move closer to understanding, thereby minimising the isolation and exclusiveness that is placed upon families.
30 September 2010
People leave permanent imprints on our lives, each individual has value, and in the process of caring for sick children and their families I marry the understanding of my own experiences with those of the people I care for. This enriches my vision of all that is difficult and all that is worthwhile in life.
“Don’t forget me” is something I have had more than one child say to me as they strive to make meaning of their shortened or limited lives. This could well be the mantra of us all as we want to leave behind us a legacy so that others will have no doubt as to what our purpose was in making a difference in this life time. To have the memory of our lives left strongly in some way opens the door to the very fact that this life is important, has meaning and has a purpose. Life is not futile…. there is hope and we are able to continue with our aspirations and dreams with expectation that all we hope to achieve will become fulfilled.
All of us would like to have the voice within us heard. There are many times that we reflect on our childhood and recall the times that we were not listened to or heard. I have been conscious of my own ‘unheard’ child’s voice as I have cared for children who live with serious illness. As this has resonated within me I have ‘reached inside’ to gather the impact of this and use it today in the here and now to make a strong stand for children. It has provided motivation for me to ensure that all children within my care will not be silenced, but will have the opportunity to speak, be heard and understood.
The life experiences we have continue to mould us and shape us as we take these experiences into any given situation. Whether they are experiences we remember with pleasure, or ones that sadden us, they have all helped scope the path we are on. For some of us this has led to great and exciting places, and for some of us we have found the way to be full of challenges and suffering. My own personal life experiences have led me to walk alongside those that find life challenging, and I certainly understand suffering created by illness and crisis.
We all have our own stories shaped throughout time and history. We take our dominant beliefs and practices for granted as they are specific to our own values, and from this we make our own meaning. As I listen to the many stories shared with me, I hear of overwhelming pain and suffering. As I am invited into these stories of the children and families I care for, it is with respect that I listen, recognizing the richness of the meeting of hearts in this way. When we share our moments of pain and suffering with another it is unveiling our soul to the person we are trusting to ‘listen to hear’. To be the one listening is a place of highest honour, but to the one sharing it is also a rich connection of spirit. A rare moment of simplest truth.
30 August 2010
As I consider the adversity that many of the True Colours families face on a day to day basis I am left reflecting on the word ‘hope’. Some of us are particularly good at finding the silver lining in a cloud and others of us find it hard to see the point or relevance in some situations. I certainly have stood in both places at different times in my life.
As we strive to find meaning in the things that happen in our lives it is more difficult when we see the impact on the family and those that are close to us. Particularly when those ‘things’ are in relation to illness, grief and loss.
As I reflect on the children we care for at True Colours I wonder how families make meaning out of their situation as their child and they live with a complex illness. How do they grow resilience that sustains them as individuals and as a family? The grief that families live with is frequently not given proper attention and care. Neither is the remarkable resilience that many families achieve.
Michael White, a Narrative Therapist said, “People’s experiences of life and their interpretation of those experiences give meaning to their experiences of the world – making sense gives meaning to the experience”.
To build resilience and strength in our relationship to ‘being’ in this world the ‘story’ we tell influences the way we think and feel. The resilient family adapts to new challenging situations and modifies hopes and dreams to align to their new situation. It takes time to build resiliency, this is a process that comes about often by way of trial and error as we learn a little more of ourselves and what our limitations are and what our capacity to do things differently are.
It is important to take note of what we would normally see are our strengths, noticing how we build into those whilst being aware of new strengths that often come out of hard painful events or situations. Given a choice we may not have chosen to have those strengths as they may have only come about because of the illness or grief. For example, parents have spoken to me about their advocacy role for their children. In the past they may never have had to so strongly advocate for their child, educating health professionals and other agencies on what is best for their child. This takes courage, insight and awareness which are certainly strengths and build into the resiliency of who you are as a person.
This also allows some sense of control over situations where there feels there is so little control. When a child lives with an illness such as cystic fibrosis there are some things that cannot be changed. There are certain treatments, medications and physical cares that are crucial to the child’s wellbeing. How those cares are implemented and how the child and family work together in this supports partnership, some sense of control and again enhances resiliency.
It is crucial to continue to develop self-esteem and confidence in who you are. This is true for all members of the family. It is so easy to lose ourselves in times of illness, sleep deprivation, grief and exhaustion. Therefore how we view ourselves in these situations can either build resiliency and hope or diminish it.
Hope allows us to believe in a tomorrow that will be better. It encourages us to keep going and brings a sense of ‘calm’ as we believe the future will become easier. But it is not until we start to believe in ourselves, in our inner wisdom and strength that the hope becomes sustainable.
I resonate with Ralph Waldo Emerson’s statement that says, “What lies behind us and what lies before us are tiny matters, compared to what lies within us”.
Families, friends and others that help in the journey of life are important, but the real sustainability is when we are able to refuel ourselves with the things that are important to us. This may be in the way of solitude, exercise, reading, music, meditation or the many other aspects that can keep building on the essence of who we are as individuals. This then will impact on who we are within our family unit.
12 July 2010
When children say to me “it’s not fair” when they can no longer jump on a trampoline or ride their bike as they used to with their brothers and sisters because of their illness, it is hard to hear. They are right. Life is not fair; particularly if these illnesses are life-limiting and if they are faced with their mortality before they reach their teenage years. We as adults are struck with the helplessness in not knowing how to make a difference and the sense of futility in not being able to change the situation.
Children continue to teach us much when they are faced with their mortality. They have a gauntlet of emotions to face and work through. Children are not immune to the emotions that adults face as some people may think. They too experience a range of emotions such as anger, sadness, frustration, envy, helplessness, powerlessness, joy, and sorrow along with other aspects of grief.
At times children are misunderstood as adults feel that children lack understanding of what may be happening to them. But this is far from the truth as it is often the child with the illness that courageously looks at the path ahead of them and faces this head on. To be able to support a child it is essential to listen. When a 12 year old boy said that “the most important thing to him was to be listened to rather than adults trying to make him feel better”, he spoke an important truth.
When faced with our own helplessness as adults, we often think we are doing the right thing by protecting a child from what is happening. We do this in different ways, but at times it means that we are not being open and honest, or we stop listening to hear what the child needs. The most important thing for children who live with illness is that they have our time, our attention and that we listen to hear. This is what truly makes the difference in relieving their fears, anxieties and frustrations. This aligns with ‘The NZ Child Health Strategy’ (1998) whose principle is every child has the right to “be seen, heard and understood”.
Children deserve our respect. They do have the right to know what is happening to them, and we need to be open to what children who live with life-limiting illnesses have to teach us.
3 June 2010
As winter is here I am aware this is a time for families to be extra vigilant in regard to protecting their children from the many virus’s and bacterial infections that are more prevalent at this time of the year.
Protection of children who are already living with compromised health needs becomes the high priority for many families. Winter brings about a different set of challenges that impacts on everyone in the family. More children are admitted to the paediatric department as chest infections are life-threatening for some children.
Parents become exhausted with the extra vigilance, sleep deprivation, and further cares that are required at this time. Some children spend weeks at a time in hospital recovering from bacterial chest infections; the hospital becomes a place of ‘second home’.
As I see children regularly returning to the children’s wards due to their complex health needs it is timely to remind ourselves as health professionals of the difficult time this is for families. Parent’s try and balance the care in the home and having someone stay with their child in hospital which adds to the stress levels.
I am reminded of how important it is to give clear communication at a time when stress levels are high. Parents frequently share with me their increased anxiety that occurs because health professionals have given mixed messages regarding care or have not taken the time to explain what is happening with their child.
As health professionals we sometimes forget the impact our words have on families already feeling the intensity of illness and the many challenges that are faced on a day to day basis.
My role is to advocate strongly for the children, young people and their families through listening to their needs and informing the appropriate people so these requirements are met in the best possible way.
26th April 2010
It has been a tough month for the True Colours team! As an organisation we support families in relation to illness of a child. We recognise the impact illness and grief have on all members of the family and those close to them.
Over this last month our own team has experienced, and is, experiencing critical illness, grief and loss first hand. We are a small team of five and often relate to each other as our ‘work family’. So when something quite significant happens to three of our ‘family’ particularly when this is in relation to loss and grief, life and death situations, it has a huge impact.
As we continue to work our way through these experiences I have been overwhelmed with people’s kindness and generosity to ‘wrap around’ and support us as individuals and as a team. As we continue to support the families that are referred to our service for nursing and psychosocial care we feel the strong presence of those caring for us as a team.
It is true that at times of crisis or in grief there is a clarity that may not have been present before. Relationships grow stronger, or differences in those relationships become more apparent. It is also a time for growth and development and new beginnings as the thoughts and feelings that are evoked cause us to try and make meaning. Our reflections challenge us to take account of our own personal way of being alongside the professional connections that shape us as a team.
As we ‘walk the walk’ of all that families share with us in their own places of illness, grief and loss it is timely to remember that within some of the pain there is beauty in the connections of relationship. Connectedness is the heart and soul of our work – to not stand alone at a time when illness, loss and grief have entered the sanctuary of all that makes you feel safe in the world; the connection of caring relationships allows us to carry on.
To all those who have supported the True Colours team over the last month, it has been appreciated and will never be forgotten. It is true; ‘the greatest treasure – He Tangata He Tangata He Tangata – it is people ,it is people, it is people’.
22 March 2010
I attended an unveiling in the weekend of a child that True Colours had supported. The presence of Aroha and Wairura were strong as we remembered this child’s life and the inspiration that continues to influence us as we take time to reflect.
The family/whanau came together to support one another in this intense time of grief and I am reminded of the fragility of life and how quickly it passes for some.
It is so easy to get caught into the busyness of each day, worrying about the everyday things and the bigger issues like globalization and what is happening to our world. We are constantly encouraged by our leaders to look at the big picture and think about what we can do to make a positive difference to our planet.
If I personally am going to make a difference in this world, I hope it is in each small step along the way. I hope that seriously ill children, young people and their families will feel the difference in the care and support that True Colours provides, so that this challenging journey of ill health and disability are not so overwhelming.
I am inspired by the children that I support in my work, who live with such compromised health issues but who continually strive to live in the moment as best as they can.
Life is fragile indeed, this I see everyday. We have choices on how we live our lives in each moment we have. I will endeavour to contribute to making a positive difference in my part of the world by listening to what is important to children, young people and their families and then implementing the care they need. The young lives that have touched mine, challenging me not to waste the time I have but to live fully in the best possible way will be my life time goal.
The children who are no longer here with us each have a purpose. I will do my best to honour them as I remember what they have taught me. I am also reminded of the Tikanga – ‘What is the greatest treasure – He Tangata He Tangata He Tangata – it is people, people, people’.
9 March 2010
Family centred care is essential when caring for a sick child. The impact of illness touches everyone therefore the family is the unit of care rather than the child being separated out without consideration of the whole family.
It is important to remember that parents should be recognized as being experts as far as their child’s needs are concerned acknowledging that they know their child the best. It is also important to remember that they also carry the burden of both the illness and the decision making.
As adults we are able to articulate our needs, for children it is harder to express what they need. Often children will display behaviour which is not usual for them. They become withdrawn, cry or scream. Their play may alter and they may act out and changes can often be seen in their drawings both in topic and colour choices.
Children are very good at being able to interpret the behaviour of those around them, gaining insight into their condition. Sick children make use of various coping mechanisms, as do we as adults when dealing with issues of pain, fear and anxiety. The coping mechanisms are dependant on the developmental age and understanding of the child.
Children often try to protect their parents and other adults in their lives. They often perceive that the topic they wish to discuss is too uncomfortable or stressful for the adults they love. Therefore they may deny the reality of their situation to protect those around them.
The emotional link that parents have with their children in most cases allows them to feel safe. Therefore, it is important for parents and health professionals to encourage open communication while respecting their right to privacy in regard to their thoughts and emotions. The use of play and artwork allows the child to express themselves concerning issues that may be troubling them. It is important not to make assumptions about what a child knows or understands.
Children who live with illness require the adults in their lives to be honest and real. They need us to listen, giving them time to share their thoughts and feelings. As a health professional I am mindful of providing care and support to families to enhance their quality of life as they live with the impact of illness.
(Ward, 2005)
20 February 2010
I am inspired by the ‘Friends of True Colours’, a group of people that are committed to raising funds for True Colours and to profile the organisation. Diane O’Sullivan set the group up initially and was coordinator until this year; she has now handed this role over to Amanda Graham but will continue to be an active member of Friends of True Colours.
We totally appreciate this group and their dedication to fundraise so that the essential service for seriously ill children, young people and their families continues. We are totally reliant on funding grants, fundraising and sponsorship and without this we would not survive as an organisation. The Friends of True Colours are always looking for opportunities to continue to support the organisation and are valued members of our team. If you would like to know more about the Friends of True Colours and become involved in any way Amanda can be contacted at amanda@sixhats.co.nz.
I have been reflecting on the generosity of the many people, businesses and organisations that have supported us to where we are today. We try and acknowledge all who support True Colours and this is available on our sponsorship page on the website. We have been grateful to those that have captured the heart of the vision to support those in the community whose lives have been touched by a child’s or young person’s illness.
The True Colours House is the generous gift from Annah Stretton as she recognizes this important work and is a way of contributing in an ongoing way to children and families with illness. This makes such a difference, and the children and families love to visit at the house.
The cars donated by Waikato Motor Group, Gerard and Celine Bourton and an anonymous donor, contribute hugely to the work that we do with families. Approximately half of the families that True Colours support live rurally, therefore this is very practical assistance, and the children love the ‘butterfly cars’ that come to visit.
Neil and Tim Finn as our Patrons, have contributed hugely and the families have enjoyed in the past, the special sound checks that have been their own mini concert!
The acknowledgement pages on the website honour all those who have contributed in some way to make a difference to the care of families. I am constantly overwhelmed by people’s generosity and support.
Most of us have not walked in the shoes of children and young people who live with serious illness; however there is still a great deal that we can do to support and comfort children and their families through their experiences of living with illness. The focus of the True Colours model of care is about partnership with the child and family supporting them through their illness and grief. This partnership includes all those that support the organisation; it is a huge team effort!
2 February 2010
As I continue to think about what is important for children and young people particularly in regard to serious illness I endeavour to stay within the philosophy of True Colours which is ‘listening to the voice of children and young people honouring their rights and wishes’.
This guides my own personal practice of making a difference for those who live with serious illness. With this in mind I look for the opportunities to improve quality of life for children and young people.
I am currently part of a steering group for the ‘Youth Transition from Paediatric to Adult Care Project’. Andrea Mockford is the Project Manager for this group (mockfora@waikatodhb.govt.nz) which is committed to establishing best practice standards for young people who live with chronic and long-term conditions for their transition process from paediatric care to adult care.
There is much evidence that supports the need for a model of care that allows a staged transition process over several years. The objectives of this model of care will be:
* To improve the health and well-being for young people between the age of 12-24 yrs
* Improve planning for adult services
* Reduce the admission into secondary health care
* Enhance quality of service delivery
(Project Initiation Document WDHB August 2009)
The project will develop a pathway for young people into adult care that diminishes some of the anxieties and concerns that young people, their families and the health professionals encounter currently.
The current guideline is for the model to be signed off for implantation by WDHB by end of June 2010. There will be much communication with young people, their families and health providers within community and hospital to ensure the young person’s needs are being met. If you would like to know more about this project don’t hesitate to contact myself or Andrea. We are committed to best practice outcomes to enhance quality of care.
25 January 2010
We are well and truly into the New Year and enjoying the reconnections with families, health professionals, sponsors and businesses. I hope there was opportunity for everyone to enjoy some time with family, friends and enjoy the sunshine somewhere.
The exciting news for True Colours is that we have finally got the downstairs therapeutic spaces finished after receiving the donation from Paul Newman’s Own Foundation to make downstairs a more therapeutic space. It has been wonderful to use it more fully and the children and families have been enjoying the space.
We are continually grateful to Annah Stretton as she so generously gave this house to True Colours for the care that children and families require. The therapeutic spaces consist of the art therapy room, Sandtray therapy room, play room (with hospital equipment), sensory quiet room and a counselling room. We have had great support alongside the Newman’s Own Foundation Trust, such as WINTEC who did the interior design, Brown Construction and Diane O’Sullivan who gave of her time to help set it up.
Play, art and Sandtray therapy are great ways of allowing children to express their emotions that is age appropriate and that they understand. Some of the emotions that are shared in this therapy allow them to make meaning out of their sadness, grief, fear, anxiety and uncertainty. It is a useful way for the team to do assessments that are non threatening to the child.
Therapeutic interaction between the child and adult allows opportunity for enhanced quality of life and wellbeing emotionally. This is an important principle as a team at True Colours to allow children to express themselves in a way that they know they are heard and understood.
23 December 2009
The year is drawing to a close and it is timely to reflect back and remember the different connections we have had with others throughout the year.
The True Colours team has met with many seriously ill children and their families who have been touched by grief, sadness, fear and exhaustion. We have celebrated the hope and optimism that is inspiring; we have seen what true resiliency is in the face of adversity as families teach us about courage as they support their children through illness. We honour the courage and resiliency of the children and young people.
The large numbers of health professionals we work alongside in supporting families are an extended part of our team, and we could not do this work without them. To those of you who support True Colours, whether that be regarding funding, practical or other support that allows this work to continue, we thank you. Without you this would be impossible.
This can be a difficult time of the year for many and I hope you all have some gentle, precious connections with those that you love this Christmas and New Year.
15 December 2009
Stephen and I ran a health professionals training day on 14th December at Waikato hospital Bryant Education Centre. The topic of the day was; ‘When you feel the fear and have to do it anyway’.
The child’s, families and health professional’s perspectives were covered. Children often inform us that they have “a sick feeling in my tummy” and it is essential that we recognize and attend to their fear. The reality of fear for sick children and their families was acknowledged. Dr Jik Loy (Child and Adolescent Psychiatrist) spoke on the role of psychiatry in supporting children with significant anxiety and fear issues related to illness and treatment.
He reminded us of the importance in recognizing the vulnerabilities of children and the psychological factors that affect a medical condition, and the interface between mind and body.
In relation to the health professionals perspective “When you’re the scary one, and you’re scared too” we focused on how we might unintentionally add to fear in children, what we can do about that and how we can support ourselves in our own fear.
In summarizing the day the generic points were:
* We all experience fear and it is mostly a healthy response
* There is always a reason for a child’s fear even if it doesn’t make sense to us
* Supporting the whole family helps reduce fear in the sick child
* How we are with a child makes a difference
* We need to pay attention to our own fears
30 November 2009
Stephen Parkinson and I presented at the Paediatric Society Conference held in Hamilton on 25th November. We presented - 'Head & Heart: Psychological and Spiritual Issues for Children - the Quality of Being with Seriously Ill Children'. Psychological and spiritual aspects of care are often given lip service but not understood. This was explored within the presentation with the use of case studies to highlight the needs of children when living with a life-threatening illness.
We then presented at the Dunedin Psycho-Oncology conference on 27th November, the topic being - 'Transcending Suffering: the Survival of the Family'. Families living with a child with cancer have ongoing adaptions shifting focus from wellness to the intense care of illness and treatment. The quality of care can be pivotal to enhancing or hindering the process of survival and making meaning of their situation as a family. The role of the health professional in supporting children and families was explored in how to help alleviate suffering and enhance meaning for the survival of the family.
Children, young people and their families continue to teach us, inspire us and guide us in how to provide care that meets their needs. Our responsibility is to share this with other health providers so that best practice is achieved.
16 November 2009
Last week I attended the Palliative Care Nurses New Zealand national conference in Wellington. The theme of the conference was - 'United we stand - Strengthening the Links'.
The Hon Tariana Turia - Associate Minister of Health gave the opening address. In her speech she spoke of an integrated approach and collaboration of services in the care of patients requiring palliative care. This would assist in cost effectiveness of resources and allow for seamless care. She endorsed the work of palliative care nurses in supporting patients and families throughout their journey of illness.
The key note speaker was Professor Nel Glass - the Director of the Nursing Research Unit: ACU National/St Vincents & Mercy Private Hospital, Victoria, Australia. Her presentations focused on 'Engaging Collaboratively and Standing Tall: Successful Inter-professional Relationships in Palliative Care' and 'Strengthening Personal and Professional Capacity in Palliative Care: The Role of Hope, Optimism and Resilience'.
This led in well for my presentation in talking about 'When the Heart Keeps Beating: Growing Resiliency in the Waiting Place'. With modern technology and medicine there are more 'success' stories of survival of life. But what does this mean for the child who lives with complex health needs and for the family supporting their child in the community when because of this advanced care the heart keeps beating? As the care becomes more complex, what does this mean for the health professionals providing the service delivery that will grow the family's resilience as they live with the impact of caring for a seriously ill child? These issues are something that health providers need to be mindful of in supporting families.
As True Colours supports children, young people and their families my hope is that when the child and family are placed at the centre of care then they will feel strengthened and resiliency is enhanced.
10 November 2009
True Colours Charitable Trust was set up in 2004 to meet the needs of seriously ill children, young people and their families. The vision was that this would be a community organisation and that the community would benefit from having specialist nursing and psychological support to meet the needs of this population group.
After being operational for five years True Colours has supported 577 families, supporting between 120 - 130 sick children/young people and their families at any one time.
True Colours continues to be able to do this work because of the generosity of the people within the community. Currently True Colours receives no direct government funding and therefore funding from donations, sponsorship, funding grants, and fund raising have fortified the service to continue to provide the care required.
Over the last two months funds that have been donated are the:
* Waikato Arts Auction at the Home Show - $3,400
* Workingmen's Club - $20,500
* True Colours Long Lunch - $30,000
This is a fantastic effort! The Trust and team appreciate this financial support as it helps to sustain the essential service to continue for sick children and their families.
It is a true community organisation. The heart of the work is about people caring for people.
