Childhood cancer and mental health

Key points include:

• Cancer describes conditions and diseases where abnormal cells divide without control, can invade nearby tissues, and may spread to other parts of the body.
• Approximately 770 children aged 0–14 are diagnosed with cancer each year in Australia.
• Childhood cancer’s physical effects and treatment can have significant impacts on quality of life and physical and mental health and wellbeing, and may reduce life expectancy.
• Support from family and health professionals can help children manage childhood cancer, enhance their quality of life, and improve their mental health and wellbeing.

Cancer describes different conditions and diseases, where abnormal cells divide without control and can invade nearby tissues. Different types of cancer affect different cells, and it can spread to different parts of the body via blood and lymph systems. The way a cancer grows, the parts of the body impacted, and the extent of cancer spread is determined by cancer type and severity. Cells that lump together are called tumours, which can be benign or malignant. Malignant tumours contain cancer cells (Australian Institute of Health and Welfare [AIHW], 2019; Cancer Australia, n.d.-a). Different types of cancer behave in different ways, impact the body differently, and require different treatments or combinations of treatment.

Childhood cancer, diagnosed at age 0–14 years, is different to the type of cancer that occurs in adults (AIHW, 2012; Cancer Australia, n.d.-a; Friend, Feltbower, Hughes, Dye, & Glaser, 2018). Childhood cancers are not strongly linked to lifestyle or environmental factors like cancers in adults, they start in different parts of the body and look different at a cellular level.

Treatment of childhood cancer is different to adult cancer, and children respond differently to treatment than adults. Children may respond to treatment better than adults because:

• cancers that children have are different to adult cancers
• children may receive more intense treatments; and/or
• children may not have any other health problems or comorbidities (Cancer Australia, n.d.-a).

What is the prevalence of childhood cancer in Australia?

During 2011–15, 35% of all childhood cancer cases were leukaemias – types of cancer that affect the blood and blood-producing tissues in the body (AIHW, 2019) – making them the most common type of cancer diagnosed in Australian children. Tumours of the central nervous systems (mainly brain tumours) are the second most common at 14% of all diagnoses in children, followed by lymphomas at 13% of diagnoses (AIHW, 2020).

Childhood cancer in 2011–15 was more prevalent in boys (55%) than girls (45%) (AIHW, 2020). Prevalence of childhood cancer was almost twice as high in children aged 0–4 years (23 per 100,000 children) than children aged 5–9 years (12 per 100,000), and 1.6 times that of children aged 10–14 (14 per 100,000) (AIHW, 2020).

Cancer symptoms in children can appear to be similar to many other medical conditions and may include:

• bruising
• lumps or swelling
• paleness
• tiredness or lethargy
• persistent pain
• movement difficulties
• fever or illness that does not resolve
• headaches
• nausea
• vomiting
• changes to vision
• balance problems, and/or
• unexplained weight loss (Cancer Australia, n.d.-a).

Three common types of cancer treatment are chemotherapy, radiation therapy and surgery. Although cancer treatment is more likely to be effective in children than adults, children are more likely to have side effects from certain types of treatment as their bodies are still growing (American Cancer Society, 2019). Some side effects may subside or even go away, but many will require ongoing visits to specialists, lifestyle changes, or even further treatment for the side effects. Cancer treatments may impact the following:

• brain development
• sensory systems
• thyroid gland
• muscles and bones
• cardiovascular system
• lungs
• teeth
• overall growth; and/or
• sexual development and fertility.

Cancer treatment sometimes also presents a risk for development of a second cancer (American Cancer Society, 2017; Cancer Council, n.d.-b). Cancer and its treatment may also impact school attendance and academic achievement (Tsimicalis, Genest & Stevens, 2018), social interactions (Cancer Institute NSW, n.d.) and participation in activities (Alizadeh Zarei, Mohammadi, Mehreban, Ansari Damavandi, & Amini, 2017).

Some children with cancer have reduced life expectancies. Cancer is reported to be the second leading cause of death in children aged 0–14 years, after injury-related deaths. During 2015–17, there were 92 cancer-related deaths a year among children aged 0–14 years, at a rate of two deaths per 100,000 (AIHW, 2020). In 2015–17, the most common cancers that caused death among children were brain cancer, acute myeloid leukaemia, and acute lymphoblastic leukaemia (AIHW, 2020).

Children diagnosed with cancer experience a range of mental health impacts. The incidence and intensity of mental health impacts can also be influenced by the age of the child, their parents’ mental health, and the type of support the child receives (Friend et al., 2018).

Research has consistently found that immediately after the diagnosis of cancer and in the months after the diagnosis, children experience increased distress, reduced quality of life, and psychosocial functioning challenges (Kazak et al., 2015). These challenges may impact on many aspects of life, including relationships, school and work (American Cancer Society, 2017).

Some post-treatment concerns that may impact immediate or long-term emotional wellbeing include:

• dealing with physical changes resulting from the cancer or treatment
• ongoing tests and check-ups
• changes to diet and activity participation
• concerns the cancer may return, or new health problems developing
• feelings of resentment for having had cancer, or having to go through treatment when others do not
• concerns about being treated differently or discriminated against by others; and
• concerns about dating, marrying, and having a family later in life (American Cancer Society, 2017).

Many survivors of childhood cancer thrive post-treatment. Over time, some childhood cancer survivors find meaning in their experience which facilitates priority setting and establishing strong personal values. For others, it remains difficult adjusting to life after cancer (American Cancer Society, 2017). It is recommended that symptoms of mental health impact are identified early, and support is accessed. Psychologists and social workers can support children early in treatment using effective interventions such as mindful-based stress reduction and cognitive-behavioural therapy (Kunin-Batson et al., 2016).

Some mental health impacts appear at least five years after the diagnosis, and can be present over 30 years after treatment has ceased. These can include:

• poor self-esteem
• depression
• anxiety
• antisocial behaviour
• post-traumatic stress disorder
• schizophrenia
• poor body image
• difficulties fulfilling expected roles
• mood swings
• oppositional defiant disorder
• drug and alcohol misuse
• suicidal ideation; and
• unmet emotional and coping needs (Cancer Australia, n.d.-b; Friend et al., 2018).

Following the diagnosis of a child with cancer, families may experience a time of increased distress, poorer quality of life, and difficulties in psychosocial functioning (Kazak et al., 2015). Many challenges and changes occur in the day-to-day life of the family, however there is also evidence that parents may eventually develop good coping and resilience (Kearney, Salley & Muriel, 2015).

In addition to facing uncertainty about progression of cancer, a cancer diagnosis may bring about new roles and responsibilities which caregivers may have had little experience in and may involve practical challenges such as adjustments to work and/or additional expenses (Taylor, Fradgley, Clinton-McHarg, Byrnes, & Paul, 2021; Teixeira, Applebaum, Bhatia, & Brandão, 2018). Caregivers may also experience distress, isolation and anxiety (Shokri, Tarjoman, Borji, & Solaimanizadeh, 2020; Taylor et al., 2021; Teixeira et al., 2018).

Siblings of the diagnosed child may experience more depression, anxiety and worse relationships with peers, compared with siblings who do not have a chronically ill sibling (Erker, Yan, Zhang, Bingen, Flynn, & Panepinto, 2018). Siblings are affected across different areas of their lives, including:

• emotional and behavioural functioning
• quality of life
• relationships with family members
• school attendance and performance and
• health behaviours (Long et al., 2018).

Cancer can have significant implications for children’s overall development and wellbeing, including ongoing mental health concerns. Early identification of these concerns and access to professional services including allied health practitioners and social workers, offers the potential to alleviate the challenges for children and their families. Further information about the impact of chronic conditions on mental health can be found within the Understanding child mental health and chronic physical conditions e-learning course.

Cancer Australia

Australian government website with information about children’s cancer, including a list of places to get support.

Consumer Involvement Toolkit

Cancer Australia’s toolkit helps people affected by cancer to engage with local health services and community, cancer and research organisations.

Cancer Council

State- or territory-specific general information about cancer, including resources and support groups in local areas. The 13 11 20 support line is available between 9 am and 5 pm Monday to Friday, connecting families with experienced cancer nurses or health professionals.

Children’s Cancer Foundation

Foundation that helps children with cancer access world-leading treatment and support. It also supports families throughout the treatment process.

Brainchild Foundation

Charity that supports children who are affected by brain and spinal cord tumours, and their families.

Youth Cancer Services

Provides specialist, age-specific treatment and support for young people with cancer.

Parenting Through Cancer

Community designed by CanTeen and Camp Quality to connect parents affected by cancer, and provide support and resources to help the family’s cancer journey.

Kids with Cancer Foundation Australia

Foundation that supports children with cancer and their families with finances.

Leukaemia Foundation

Foundation that has resources and support services for people with leukaemia and their families, occasionally providing accommodation near major hospitals.

Redkite

Provides financial assistance, emotional support and educational assistance to children with cancer and their families. It also has scholarships available for specific educational goals.
The support line 1800 REDKITE is open between 9am and 7pm Monday to Friday.

Ronald McDonald House Charities

Charity that provides programs including educational support and accommodation near treatment centres.

Starlight Children’s Foundation

Foundation that provides a range of programs to support the wellbeing of seriously ill children.

Kids’ Cancer Project

Independent national charity dedicated to supporting childhood cancer research.

Beyond Blue

Beyond Blue provides information and support to help everyone in Australia to achieve their best possible mental health. The service supports those experiencing depression, anxiety or going through a difficult time. The phone service 1300 224 636 operates 24/7, while the website offers online chats, email support and online forums.

GP and psychologist

Families can consult with their local health professional to get access to specialised support.

Healthdirect Australia

Healthdirect is a national, government-owned, not-for-profit organisation supporting Australians in managing their own health and wellbeing through a range of virtual health services. Health advice is available on 1800 022 222.

Kids Helpline

Kids Helpline is a free, private and confidential 24/7 phone and online counselling service for children aged 5–12 years and young adults aged 18–25. Qualified counsellors are available via phone on 1800 551 800 or via WebChat or email.

Lifeline

Lifeline is a national charity providing all Australians experiencing emotional distress with access to 24-hour crisis support and suicide prevention services. Available via phone on 13 11 14.

Parentline

Parentline is a confidential telephone service providing professional counselling and support in Queensland and the Northern Territory. Available via phone on 1300 301 300.

Raising Children Network

Raising Children Network is a comprehensive and trusted online resource for parenting information. A website includes information on children’s health and wellbeing across the ages. It includes videos, fact sheets and downloadable toolkits on child development, behavioural problems and health issues.

Alizadeh Zarei, M., Mohammadi, A., Mehraban, A., Ansari Damavandi, S., & Amini, M. (2017). Participation in daily life activities among children with cancer. Middle East Journal of Cancer, 8(4), 213–222.

American Cancer Society. (2017). Late effects of childhood cancer treatment. Atlanta: American Cancer Society. Available here.

American Cancer Society. (2019). What are the differences between cancers in adults and children? Atlanta: American Cancer Society.

Australian Institute of Health and Welfare. (2012). A picture of Australia’s children. Canberra: AIHW.

Australian Institute of Health and Welfare. (2020). Australia’s children. Canberra: AIHW. Available here.

Australian Institute of Health and Welfare. (2019). Cancer in Australia 2019. Canberra: AIHW. Available here.

Cancer Australia. (n.d.-a). What is children’s cancer? Canberra: Cancer Australia. Available here.

Cancer Australia. (n.d.-b). Working through the family’s emotions. Canberra: Cancer Australia. Available here.

Cancer Council Queensland. (2017). A Summary of Childhood Cancer Statistics in Australia, 1983–2017. Townsville: Cancer Council Queensland. Available here.

Cancer Council. (n.d.-b). Life during and after childhood cancer. Sydney: Cancer Council. Available here.

Cancer Institute NSW. (n.d.). The effects of cancer on social and emotional wellbeing. Sydney: Cancer Institute NSW. Available here.

Erker, C., Yan, K., Zhang, L., Bingen, K., Flynn, K. E., & Panepinto, J. (2018). Impact of pediatric cancer on family relationships. Cancer medicine, 7(5), 1680–1688. Available here.

Friend, A. J., Feltbower, R. G., Hughes, E. J., Dye, K. P., & Glaser, A. W. (2018). Mental health of long-term survivors of childhood and young adult cancer: A systematic review. International Journal of Cancer, 143(6), 1279–1286. Available here.

Kazak, A. E., Abrams, A. N., Banks, J., Christofferson, J., DiDonato, S., Grootenhuis, M. A. … Kupst, M. J. (2015). Psychosocial assessment as a standard of care in pediatric cancer. Pediatric Blood & Cancer, 62(S5), S426–S459. Available here.

Kearney, J. A., Salley, C. G., & Muriel, A. C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62(S5), S632–S683. Available here.

Kunin-Batson, A. S., Lu, X., Balsamo, L., Graber, K., Devidas, M., Hunger, S. P. … Kadan-Lottick, N. S. (2016). Prevalence and predictors of anxiety and depression after completion of chemotherapy for childhood acute lymphoblastic leukemia: A prospective longitudinal study. Cancer, 122(10), 1608–1617. Available here.

Long, K. A., Lehmann, V., Gerhardt, C. A., Carpenter, A. L., Marsland, A. L., & Alderfer, M. A. (2018). Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review. Psychooncology, 27(6), 1467–1479. Available here.

Shokri, M., Tarjoman, A., Borji, M., & Solaimanizadeh, L. (2020). Investigating psychological problems in caregiver of pediatrics with cancer: A systematic review. Journal of Child and Adolescent Psychiatric Nursing, 33(4), 229–238. Available here.

Taylor, J., Fradgley, E., Clinton-McHarg, T., Byrnes, E., & Paul, C. (2021). What are the sources of distress in a range of cancer caregivers? A qualitative study. Supportive Care in Cancer, 29, 2443–2453.

Teixeira, R. J., Applebaum, A. J., Bhatia, S., & Brandão, T. (2018). The impact of coping strategies of cancer caregivers on psychophysiological outcomes: An integrative review. Psychology Research and Behavior Management, 11, 207–215. Available here.

Tsimicalis, A., Genest, L., & Stevens, B. (2018). The impact of a childhood cancer diagnosis on the children and siblings’ school attendance, performance, and activities: A qualitative descriptive study. Journal of Pediatric Oncology Nursing, 35(2), 118–131. Available here.