Study explores social needs of youth with cancer

A Massey University researcher is exploring social interactions and comments that can help or hinder adolescents and young adults dealing with cancer.

Clinical psychology doctoral candidate Nicole Cameron has experienced what it's like when people say the wrong thing, or don't know what to say at all when they are talking to a young person with . She was diagnosed with cancer in her teens, and has since made a full recovery.

Adolescence and youth can be tricky enough with normal developmental changes to contend with, she says. Add in the uncertainty, fear and loneliness of coping with a – including such things as the physical impact of chemotherapy on a 's emerging identity and self-esteem – and youth can be extremely hard to navigate.

"There's so much going on in these years – you're focused on growing up, finding your identity, sorting your , independence, relationships. And there are huge physical changes. Cancer interferes with all of that," says Ms Cameron, who is based in the School of Psychology, at the Manawatū campus.

"Social support is an essential part of a person's experience with cancer. But can be both positive and negative, and unfortunately the latter can be detrimental to a person's physical and psychological health," she says.

She recalls being approached by students at school that she hadn't met, who asked if she had cancer or if she was wearing a wig. "There were also many personal questions asked by peers and adults alike, who didn't realise they were coming across as intrusive or inappropriate," she says. "The right to privacy is somewhat challenged when a person is diagnosed with cancer, but this doesn't mean that the individual feels like sharing all of the details of their personal journey."

For her study she wants to hear from people aged 16 to 25 years who have, or have had, cancer (preferably within the past three years), who have finished treatment, and who would like to share their positive and negative experiences communicating with others. The study involves three parts – the first involving an interview, the second a card-sort task, and the third an online questionnaire. Participants can choose if they would like to be involved in all three studies, or just one.

By finding out more about the communication experiences, needs and sensitivities of young people, she hopes to ultimately produce information that will help families, friends and health agencies provide the right kinds of support for young people they know with cancer.

Some participants will be identified through CanTeen, which has endorsed the study and has offered to help recruit participants. However, while many young people with cancer gain invaluable support through CanTeen, she says not everybody is connected to the organisation. She would like to hear from a wider selection of who currently have, or have experienced, cancer.

On average 160 adolescents and aged 15-24 are diagnosed with cancer each year. The most common cancers for this age group are lymphomas, leukaemias, carcinomas, bone tumours, melanoma and germ cell tumours.


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