Our series on the Advanced Breast Cancer Support Group, a Queensland support group addressing the needs of women living with advanced breast cancer, has celebrated the incredible members of the group, as well as psychotherapists Mary O'Brien and Pia Hirsch, who run the group.
Members have said when they sought out the Advanced Breast Cancer Support Group, they were looking to meet with other women who were living and coping with advanced breast cancer, to create meaningful connections with people who were going through the same thing.
The effectiveness of the type of support offered by the group in helping to improve psychological wellbeing and reduce distress has been shown in ongoing evaluations conducted by the group. When women first join the group, and at six-month intervals thereafter, they are asked to complete a set of questionnaires regarding their experience of living with secondary breast cancer. The responses are combined to form an overall picture of the group's physical, emotional and cognitive experience.
Each year the data is analysed in order to indicate how helpful the group has been in regards to improving wellbeing and reducing distress. Between 2001 and 2014, members completed two questionnaires - the Affects Balance Scale (ABS) and the Impact of Event Scale (IES) - about mood and psychological distress. The ABS questionnaire, which assesses positive and negative affect as indicators of life satisfaction and general well-being, showed that after 12 months in the group there was a significant reduction in negative feelings such as guilt, anxiety and depression, and an improvement in positive emotions such as contentment and affection. An exception to this improvement was the results for vigour (energy, liveliness and activity) which were very low throughout, compared to a random sample of individuals in the community without cancer.
Results of the IES questionnaires, which tests whether women tend to avoid thinking about the effects of the illness (avoidance) or can't help themselves thinking about it (intrusion), showed that group members experience many more intrusive thoughts than avoidant thoughts, but after 12 months in the group there is a significant reduction in intrusive stress response symptoms.
Analysis of data taken after two years in the group has shown that in general, benefits gained after 12 months in the group have been maintained or in some instances further improved. Data from additional questionnaires show various results including reductions in all of the negative mood states (except for fatigue/inertia) after 12 months in the group, as well as a significant reduction in 'anxious preoccupation' over the same time period. The data further indicated that after 12 months in the group, the women were participating in a higher number of social activities compared with when they first joined. On the adjustment to cancer scale, the women tend to show more 'fighting spirit' and less 'helplessness/hopelessness', which suggests the group is helping women adjust to their diagnosis.
Possibly most heartening, is another finding; that women in the group experience healthy family functioning, which in turn, may positively affect their overall well-being, as well as their ability to live with cancer. Many members have said it is their ability to have real and raw conversations about things such as death and dying without being judged is an essential element of the group.
Professor Jane Turner, UQ Faculty of Medicine, Royal Brisbane Clinical Unit, said having these difficult conversations can be a liberating experience, one which allows those with a terminal diagnosis to make the most of the rest of their lives.
"Even if you don't know what's happening, it is a really helpful thing to think about the 'what ifs'," Professor Turner said. "No one wants to go there, but every single person I have ever had who has had that 'what if' discussion, actually feels like a weight has been lifted from their shoulders. My experience is there are difficult conversations to have, but it's even harder to hold it inside, feeling as though you are walking on eggshells. It's just too tiring. And once it's on the table, people find that they feel liberated. Absolutely liberated."
Visit www.advancedbreastcancergroup.org.au to learn more about the incredible work being done by the dedicated team.