By Vinelle Leung
Table of Contents
3. Child Cancer Education in Hong Kong
6. About the Author
On September 25th 2015, United Nations (UN) member states adopted the 2030 Agenda for Sustainable Development. 17 Sustainable Development Goals (SDGs) with the aim to ‘end poverty, protect the planet, and ensure prosperity for all’ have been set to be achieved within the next 15 years. Goal 3 seeks to ensure health and well-being for all as part of building sustainable societies. One of the targets of Goal 3 is to reduce premature mortality from noncommunicable diseases, including cancer, by one-third by 2030 (UN, 2016).
In recent years cancer has emerged as a major health problem in Hong Kong. A total of 28,936 new cancer cases and 13,589 deaths were registered in the latest report of Hong Kong Cancer Registry in 2013 (HKCaR, 2015). Although cancer is most commonly diagnosed in older people, children (aged 0-19) represented a mere 0.8% of all new cancers, an average of about 200 new cases. Around one child in every 10,000, were diagnosed each year during the period of 2003 to 2013. The record of the Children’s Cancer Foundation (CCF) (2015b) shows 169 new cases and 43 death cases in 2015. Childhood cancer stays a significant focus in public health because of its long-term side effects on children’s health throughout all stages of life and its social, economic, and environmental implications for the urban area.
Compared with technological and scientific progress, education is not the most immediate solution to premature mortality from cancer. However, education promotes understanding and nurtures empathy towards child cancer patients through raising public awareness and reducing the knowledge gap about the disease.
This entry reviews life education at local secondary schools developed by the CCF, the largest children cancer support organisation in Hong Kong through the lens of transformative learning theory. Other childhood cancer organisations in Hong Kong such as Little Life Warriors Society and Children’s Catastrophic Disease Foundation are not discussed in this entry, but their meaningful work to the children and the society should not be undervalued.
Among various types of childhood cancers, leukaemias, which are cancers of the bone marrow and blood, are the most common childhood cancers. They account for about 31% (54 cases) of total new childhood cancer cases in Hong Kong in 2014, followed by cancers of the brain, lymph glands, nerve cells, bone, and soft tissue tumours.
The diagnosis of cancer, with the life-threatening connotations, generates anxiety within patients and their family members. Psychological distress is observed among family members including feelings of despair, retreat, and helplessness (Thomas, 1978).
Childhood cancer is not contagious and over 70% are curable (Chronic Illness Alliance, 2016). However, many patients need to go through long and difficult treatments such as phases of chemotherapy, surgery, and radiotherapy, and in some cases, bone marrow and stem cell transplant. Although scientific and medical improvements increase the survival rates and reduce the adverse side effects of treatments, some patients still experience late effects which may impair survivors’ health and affect their quality of life (Chan, 2015). The most common late effects of childhood cancer are neuro-cognitive and psychological, cardiopulmonary, endocrine (e.g., those affecting growth and fertility), musculoskeletal, and second cancers. There is a growing appreciation of childhood cancer as a chronic disease with implications for continuing care, and thus the long-term survivorship experience impacts family members and the whole society (CCF, 2015b).
Research on the public perception of childhood cancers in Hong Kong is limited. Kuan’s (2000) study shows that the public has little knowledge about cancer, and, thus, might not understand the feelings and experiences of children who have cancer and their families. Childhood cancers are rare diseases in Hong Kong. Many caregivers shared their personal experience of being ‘stared at strangely’ and ‘asked annoying and discriminative questions’. They expressed the need to promote public awareness of cancer in children in order to reduce people’s misconceptions about cancers.
3. Child Cancer Education in Hong Kong
The Children’s Cancer Foundation in Hong Kong was established in 1989 by a group of patients’ family members, nurses, and other concerned individuals. One of the missions of the CCF is to improve the quality of life of child cancer patients and their families. The Family Service Centre of CCF reaches out to the community through media and publications, exhibitions, and Life Education for Schools talks at secondary schools (‘the Talks’). The Talks, titled “I Love My Life”, aim to enhance students’ knowledge and understanding towards childhood cancers, and to encourage young people to cherish their lives (CCF, 2013). They are designed in two parts: first, a registered nurse starts with an introduction of the medical aspects of childhood cancers; and next, a cancer survivor and his/her family member hold a session to discuss their experiences.
This approach employed by the CCF is informed by the transformative learning theory introduced by Mezirow (1991). He described that learners transform by ‘interpret[ing] and reinterpret[ing] their sense experience and structures of assumptions through their sense experience’. When experience is too strange or threatening to the way we think or learn, we tend to block it out (‘cognitive distortion’) or interpret it in a compatible way (‘defence mechanism’). Cancers are rarely diagnosed in children, which means that children and their caregivers lack experience and knowledge to interpret the meaning of cancers to their lives and communicate it to the public. Although with the improvement of technology, treatments for cancers have evolved and many cancers are curable, fear towards the disease persists. Leukemias and brain cancers, which have a relatively lower survival rate compared with other types of cancers, have often been dramatised and the adverse effects and symptoms are exaggeratedly emphasised in mass media such as newspapers, movies, songs, novels, and TV drama series. These have reinforced misperceptions of cancers and strengthened the negative association between cancers, death, and the loss of loved ones.
The process of transformation may not necessary solve medical problems but it may challenge one’s meaning structure, the broad sets of predispositions which limit people’s expectations, perceptions, and assumptions (Mezirow, 1997, p. 5); and most importantly, it may reduce unnecessary additional damage to families due to communication barriers and lack of basic knowledge about childhood cancers. A mother who has a child with cancer shared with Kuan (2000):
…when people asked what is the matter with her, I said she's sick. I don't say that it's cancer. For the friends who are not close enough, I don't need to explain, because I'm too tired. If you talk to a friend, there'll be a lot of questions. Why did she get this disease? How's she at the beginning? Talk too much, very tired, really tired. (p. 306)
Learning involves a range of experiences in which knowledge is socially and collaboratively constructed. In this sense it is a process of listening, questioning, relating, symbolising, feeling, and reflecting. Central to Mezirow’s transformative learning theory is the making of meaning and reflection which enables learners to correct distortions in their beliefs and errors in problem-solving. In his words, learning is ‚the process of making a new or revised interpretation of the meaning of an experience, which guides subsequent understanding, appreciation and action’ (p. 1).
In line with this view, the aims of the Talks are to provide basic medical knowledge about childhood cancers, rectify misunderstandings, and eventually change the attitudes and behaviours of secondary school students toward patients and their family members (CCF, 2015a). The Talks consist of two parts: instrumental learning and reflection through life stories.
- Instrumental Learning
In instrumental learning, people reflect on their own understanding and knowledge of the world through empirical evidence and ensure that their underlying assumptions are correct (Mezirow, 2011). The first part of the Talks is straight-forward. A registered nurse gives a factual introduction about childhood cancers in Hong Kong in order to lay a knowledge base and guide secondary school students (the audience) to proceed to a higher level of learning about childhood cancers. Beyond the construction of knowledge, the nurse answers questions and debunks misperceptions with facts and empirical evidence. The students thus learn what to do as educated people and work to control any unfavourable behaviours when they meet a family with a child who has cancer. Rademacher (2004) describes this approach as ‘a scientific way of knowing’ and ‘a very pragmatic aspect’ of such a kind of learning.
- Reflection through Life Stories
In the second part of the Talks, survivors share their paths of overcoming the shock of learning that they have a cancer, painful treatment, their methods of coping and motivating themselves to fight for survival, and their reflections. All these stories are presented to students through storytelling. The storytelling approach is an inclusive communication where learners are invited to engage in an organic dialogue with educators (Tyler & Swartz, 2012). When students listen to the Talks, they are invited to debunk their original thoughts about the disease, imagine themselves as survivors in different stages, and develop empathy towards patients. Sometimes, videos and photos of childhood cancer patients are added to amplify a holistic message to audiences.
Building on personal stories about the disease, survivors encourage students to open their minds towards the topic of ‘death' as the diseases is seen through the lens of death. The stories bring in new perspectives to challenge the default assumptions about cancer and death, and create new meanings.
I don’t afraid of death! I have experienced a lot and I can still stand on this stage. I have earned my days. Death may come anyhow and no one can stop it. I had a few times of near-death experience so I am not afraid of it!… My cancer has recurred for a few times but I am still alive. I am very lucky comparing to my friends who died. Because of them I cherish every day and live happily so I will not disappoint them.
— Extracted from the conversation with survivor Angel Mui (CCF, 2013)
Centred in the life stories is a message of ‘where there’s life, there’s hope’ (CCF, 2015a, p. 75) — to inspire students to face adversity and help them develop a positive view of life through spreading encouraging experiences. It is a journey of rediscovering hope in one’s life. Some of the survivors are of similar age to the students, which strengthens the association between the survivors and the students when they act on some aspects of engagement throughout the Talks. Students can ask questions and relate the life experiences of the survivors to their own.
The beauty of the transformative learning process is its objective to find coherence in and redefine meaning of forces and relations that make up our lives (Fowler, 1981). By adopting Mezirow’s (1991) transformative learning theory, the Talks is a comprehensive project that meets the aims to promote public awareness of cancer in children and to reduce people’s misconceptions about the disease. Many secondary schools have been enthusiastically signing up for the Talks since its first session in July 2008, and there is a waiting list of around three months (at the time of this publication). CCF has been carefully evaluating the situation of survivors and their family members and selecting appropriate ones to share their life stories.
Childhood cancer is not a topic for all. It is a technical topic of medical knowledge and an emotional discussion about life and death. Secondary school students, i.e. the audience of the Talks, are expected to have prerequisite communicative and reflective abilities in order to bring in new knowledge and experience to ‘an already well-developed symbolic frame of reference’ (Mezirow, 2002, p.10). As suggested by Mezirow (1991), transformative learning is the focus rather than the outcome. Nevertheless, it should be noted that it is challenging to evaluate transformations that take place in secondary school students after they participate in the Talks. Further research is required to study effectiveness of the Talks and social misperceptions towards childhood cancers which students may still accept after.
Hong Kong's first Children Hospital will be commissioning in 2017 (Hospital Authority, 2016). It is hoped that the city will have an advancement in the provision of medical care to children and a more comprehensive support in the community through education and community service.
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About the Author
MEd, The University of Hong Kong