Not everyone with cancer can be a media hero battling the odds with a feisty survival story, says a Massey researcher. Dr Colette Nixon studied the impact of therapy provided by a unique Massey University-led psychology service for cancer patients in the Manawatü region.
Despite numerous campaigns and positive stories in the media about cancer survivors, for many the word ‘cancer’ means death and loss, says Dr Nixon, a clinical psychology doctoral graduate. The psychological and emotional impact of this has only recently begun to be recognised, she says.
"Despite advances in cancer treatment and continual increases in cancer survival rates, the perception that cancer is still incurable persists," she says.
Dealing with the stress this causes is the focus of a joint venture between the MidCentral District Health Board and Massey University’s Psychology Clinic. The Cancer Psychology Service: Te Ara Whatumanawa - unique in New Zealand - was not only the topic of Dr Nixon’s doctoral thesis but where she worked as an intern while completing her research.
Her research found the specialised nature of the Cancer Psychology Service gave clients a heightened sense of confidence because they felt that the therapists understood clinical aspects of cancer diagnosis and treatment as the context for their emotions, and had experience in helping others like them. This made it easier for them to open up emotionally, particularly those for whom the idea of seeking psychological help had some stigma attached.
An estimated 30 per cent of all cancer sufferers don't cope with high levels of distress caused by cancer treatment as well as the disease itself. People living with cancer face what they term the "5Ds" - potential of death, increased dependence, disability, disfigurement and disruption of life’s plans. Diagnosis of cancer can include anxiety, depression, pain, depression, delirium and fatique.
Dr Nixon says the Cancer Psychology Service, located at Massey’s Manawatü campus and available free to people in the region, helps those coping with a cancer diagnosis to manage their emotional distress at different crisis points. These encompass diagnosis, the start of treatment, the end of treatment, recurrence of cancer and, in some cases, the terminal phase.
"The transition from treatment to cancer survivor is frequently a time when a patient’s distress levels may increase significantly. Rather than celebratory, people may feel a fear of recurrence," she says.
Dr Psychologists at the service are trained to detect the nuances of how cancer and its treatment affects people, she says. For example, depression - with symptoms such as fatique, weight loss, reduced appetite and sleep disruption - can be mistaken for cancer symptoms. If the depression is not identified and treated, it can result in poorer outcomes for the actual cancer treatment.
Other issues for people with cancer include feeling guilt and fear of being a burden to others, potentially leading to communication problems within couples and families.
A sense of loss can entail loss of fertility and future plans to have a family; loss of intimacy and sexual relations; loss of income through being unable to work for lengthy periods; loss of identity through dramatic changes to the body; and loss of connection to those around them.
They may want to talk to someone outside the family to sort out conflicting advice about treatment options, or lifestyle changes and challenges.
"There’s no simple formula," she says. "The starting point is accepting whatever it is they are feeling, reassuring them that its OK to feel distressed, angry, sad, that it’s ok to cry. Some people will say ‘I shouldn’t be feeling like this - there are others worse off.’ It’s important to have someone to express those feelings to."
The service - which employs six psychologists and several interns - also caters for family members struggling to deal with distress at a loved one’s cancer diagnosis.
Therapists she interviewed for the study reported experiencing a deep therapeutic connection with cancer clients because they faced a potentially life-threatening condition, and had a sense of urgency about discussing core issues. Peer support strengthened the team and the service as psychologists could review cases and strategies, says Dr Nixon, who is currently employed at MidCentral Health’s Child Development Service.
Hers is the second major study of the Cancer Psychology Service since it began eight years ago. She hopes the findings and recent increased funding for cancer support will help with the establishment of more dedicated cancer psychology services around New Zealand.
Clinic director Dr Shane Harvey says the response from clients and referrers to the service has been "overwhelmingly positive".
"Staff from this service are recognised nationally and internationally for their expertise in this area, and not only see clients in the clinic and community, but also provide education, training, and support to multidisciplinary health professionals in the community and hospital," he says.