Background

When children or teenagers are diagnosed with cancer, they may experience challenges like social isolation while stuck at home or in hospital, feeling “different” because of physical appearance changes like hair loss, or being excluded from social activities. Two previous research studies from more than 15 years ago also showed that young people with a history of cancer may also experience serious symptoms of social anxiety, which is usually described as the significant fear of certain social situations, in which young people experience distressing worry about how others perceive them. For someone experiencing serious social anxiety, meeting new people, attending a busy social event, or presenting in class can be really difficult things to do. Yet, these are all behaviours that are key to young people having active, normal and meaningful social lives, and thriving as they mature into adulthood.  

Around 5-13% of young people in the general population (without a history of cancer) experience such serious levels of social anxiety symptoms that they have been diagnosed with Social Anxiety Disorder. This is a mental health disorder where fear of meeting new people or participating in certain social activities is so severe that young people become very distressed and often decide to avoid certain kinds of social activities all together. Individuals with Social Anxiety Disorder need treatment from a clinical psychologist. No recent studies have tried to understand how common serious symptoms of social anxiety may be among young people with a history of cancer. We also do not know from previous studies what impact social anxiety symptoms might have on the daily life of young people with a history of cancer.  

We conducted a research study to understand: 

1. The proportion of Australian survivors of childhood and adolescent cancer who experience serious symptoms of social anxiety (suggesting they might have Social Anxiety Disorder) 

1. How survivors describe the impact of these symptoms on their daily life 

​Findings

We asked 57 survivors of childhood or adolescent cancer who were currently between the ages of 13-25 to participate. We invited them to complete one survey and one interview. Surveys were completed by 27/57 survivors, who were between 1-16 years old at their time of diagnosis.  

We found that 9/27 survivors (33%) experienced ‘clinically significant’ symptoms of social anxiety. This means the symptoms were so serious that they negatively affected young people’s functioning in daily life and signaled that young people might have Social Anxiety Disorder. In interviews, these survivors described how social anxiety caused them to have thoughts of worry and fear during social interactions, which led to behaviours like avoidance. ​

What’s next? 

We need to make sure that we pick up and treat social anxiety symptoms among young people with a history of cancer. When these symptoms are left untreated, they can last for 10 years or more, or get worse over time. Social anxiety symptoms are also linked to other social and emotional concerns, like depression, other forms of anxiety, and education or workplace challenges. Our findings suggest young people diagnosed with cancer may be at risk of serious social anxiety symptoms, so it is important for researchers and clinicians to work together to find ways to better assess and address these symptoms.  ​

To do this well, there are many questions that still need answering. We do not know if tools used to assess social anxiety symptoms in young people without a history of cancer give us a good picture of these symptoms and the unique ways they might occur among young people with a history of cancer. We also do not know when social anxiety symptoms may begin after a cancer diagnosis, or if there are certain factors that might predict which young people with cancer may develop more serious social anxiety symptoms over time. Our team is working on studies to answer these questions. We hope this will help us to better protect and promote positive mental health and healthy social functioning among young people diagnosed with cancer. 

This paper was published in the Journal of Adolescent and Young Adult Oncology. 
You can read the full paper here.

Background

Supporting a child through illness or injury that is serious enough to require hospitalisation may be the most distressing challenge a parent will ever face. Families with hospitalised children experience emotional,  social, practical and financial stress during their child’s hospitalisation. Aiming to ameliorate some of these stressors, Starlight Children’s Foundation’s Starlight Express Rooms have become an integral part of children’s hospitals across Australia. Starlight Express Rooms offer families a non-clinical, fun, and vibrant environment in which to find respite from clinical wards and to receive emotional, social and practical support. Despite a multitude of anecdotal reports that Starlight Express Rooms are appreciated by families, the Starlight Children’s Foundation identified that more research was needed to fully document the value and significance of the Starlight Express Rooms.
Results from this research can inform the on-going investment in these rooms in Australia, as well as other playrooms/recreation rooms in children’s hospitals around the world.
 
Participant information
​

• Parents of hospitalised children were eligible to participate if their child had used the Starlight Express Room in the previous 12 months.
• 123 parents completed questionnaires
  • 60 had accessed the room in Sydney Children’s Hospital, and 63 had accessed the room in Monash Children’s Hospital.
• 13 parents completed an interview

 
Findings
​
1. What are parents’ positive and negative associations with the Starlight Express Rooms?
Parents overwhelmingly reported positive associations with the Starlight Express Rooms and were far less likely to report negative associations with the Starlight Express Rooms (Figure 1). 

2. How does use of Starlight Express Rooms relate to parent and child wellbeing?
Parents who reported ‘clinically relevant stress’ used the Starlight Express Rooms more times than parents who did not report ‘clinically relevant’ stress.
Parents who reported lower child physical functioning used the room more than those who reported higher child physical functioning
3. What are parents’ most and least valued aspects of the Starlight Express Rooms?
Most valued: Parents reported that the Starlight Express Rooms gave them respite from the hospital and medical realities, while also providing their children with much needed fun and laughter. Parents also reported the importance of social support from the Captain Starlights, volunteers, and other parents using the room.
Least valued: Parents reported that the rooms were not particularly accessible for infants and very young children. Parents also wanted more access to the Starlight Express Rooms and the Captain Starlights and suggested extending opening hours of the Rooms.
 
Summary
​
Overall our findings demonstrate the overwhelmingly postive benefit of Starlight Express Rooms for hospitalised children and their families. The respite and social support provided within the Starlight Express Rooms may be particularly important for highly distressed parents and families of children with lower psychosocial functioning. It appears as though the room being a medical-free zone, the mythology of the Captain Starlights, and the emphasis on joy and fun in the room, culminate to offer a sense of escapism within the hospital, resulting in families experiencing respite and support. Nevertheless, limits to the accessibility of the recreation rooms may hinder them from providing support to families of very young children and infants, and to families of children who are critically unwell (e.g. admitted to the ICU). 

This paper was published in the Journal of Pediatric Nursing. You can read the full paper here.