Helen Gooden

PhD candidate

Identify the unmet needs for psychosocial support for people affected by pancreatic cancer; patients, partners and caregivers


Supervisor: Kate White and Andrew Biankin


Globally and in Australia, pancreatic cancer is ranked fifth overall in terms of mortality (after cancer of the unknown primary). It has the worst five-year relative survival rate of all cancers at less than five percent (4.6%) and this has remained unchanged in over 30 years. Diagnosis of pancreatic cancer is typically at an advanced stage of the disease with subsequent poor prognosis and potential life expectancy of less than 12 months. The short survival time of pancreatic cancer patients forces patients and families to make rapid decisions regarding treatment options and care, under considerable pressure and stress. No specific supportive care programs exist in Australia to meet the needs of people affected by pancreatic cancer. Cancer Council NSW identified a high need for ‘Psychological/Emotional Support’ for ICD: C25 (Pancreas Cancer). In addition Cancer Helpline consultants detailed their frustration at the lack of psychosocial support services available for this group. A comprehensive literature search revealed that although the needs and concerns of cancer patients and their carers has been well researched in the oncology field in general, studies investigating the psychosocial impact for people by specific tumour site is lacking. The incidence rate for pancreatic cancer is lower in comparison to other cancers and as the survival rate is poor, the representation of the pancreatic cancer patient and/or caregiver is low. The hypothesis is that there is a significant level of unmet need for supportive care for people affected by pancreatic cancer; patients, partners and caregivers.

The aims of this study are to:

  • identify the psychosocial support needs of people affected by pancreatic cancer; those diagnosed, partners and caregivers, from diagnosis onwards.
  • identify areas of unmet need for psychosocial support of people affected by pancreatic cancer in the three cohorts, those diagnosed, partners and caregivers.
  • to develop a supportive care strategy to meet the psychosocial support needs, that has adaptability and transferability for other tumour sites.

A research plan was devised which included consumer involvement from inception to dissemination of findings. A qualitative inquiry framework informed by Denzin’s (1989) Interpretive Interactionism, was used to facilitate exploration of the participants' perspective and experience. Two groups of participants (n=37) were recruited: individuals diagnosed with pancreatic cancer; partners and caregivers.

Significance

In order to develop an effective support network for people affected by pancreatic cancer, patients, partners and caregivers, it is essential to identify their psychosocial support needs and assess the areas of unmet need for psychosocial support. Appropriate supportive care interventions may enhance coping strategies and lead to perception of improved quality of life when survival is not an option.