Study to help youth with cancer on the cards

'Are you wearing a wig?' is the kind of question that a young person with cancer might be asked. Whether it makes them feel embarrassed or supported depends on how it is delivered and interpreted.

Massey University psychology doctoral student Nicole Cameron is seeking around 30 people aged between 16 and 25 years who have been diagnosed and treated for cancer to take part in a card-sorting task in which participants are required to group similar kinds of social interactions.

She will collate the results of the card-sorting exercise to form a multi-dimensional model to map the emotional interactions of young people with cancer.

Using the model, Ms Cameron wants to find out more about communication experiences, needs and sensitivities of young people with cancer. Her findings will form the basis for producing information that will help families, friends and health professionals provide the right kinds of support for young people with cancer.

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

Examples of comments and reactions the participants might have experienced and are being asked to sort are: "Over-protective of me"; "Told me, 'You'll be fine'''; "Whispered about me"; "Assumed that now treatment is over I am fine"; "Commented that I look good"; and "Shared their own experiences with cancer."

She wants to find out, for example, if participants believe practical assistance and concerned questions have a similar emotional impact, of if they rate questions about their treatment as similar to questions about their bodies, or consider these to be different concepts.

Personal experience fuels interest in social needs of youth with cancer

Her desire to research this topic was sparked by her own experiences as teenage cancer patient, and her awareness of the unique challenges for people in this age group in dealing with what can be a life-threatening condition during a significant time of their development.

Her study addresses the social aspects of cancer in the context of youth development, when self-consciousness about body image, emerging sexuality, emotional turbulence and peer pressure are keenly felt. Being diagnosed and treated for cancer, and managing visible side effects (such as hair loss, weight gain and disfigurement), can add another whole dimension to the turmoil of youth, she says.

The model she will create from the responses will help to provide an understanding of the relationships between interactions in a similar way to how a globe represents the approximate distances between countries, she says.

"An understanding of these relationships should support researchers to apprehend the role and importance of psychosocial interactions to adolescents and young adults who experience cancer." 

She knows from experience what it's like when people unintentionally say the wrong thing, or don't know what to say when talking to a young person with cancer.

Cancer diagnosis adds to challenging teen years

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

"There's so much going on in these years – you're focused on growing up, finding your identity, sorting your education goals, 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.

She says that while organisations such as CanTeen provide valuable support, not all young people seek their help. Young people in rural areas and small towns in particular may feel isolated and unsupported and it is important that all young people with cancer are provided with the support that they need.

The card-sorting test takes about one hour to complete. Participants will receive the material via post, and after completion participants will receive a $20 gift card.