After defining the aims of the project, the next step of the study was to identify the different factors linked to parental caregiving and childhood cancer, incorporating optimism through in-depth semi-structured interviews. Five high optimistic and five high pessimistic parents took part in the study. The median age of the participants was 37 years (range 24-48 years). Both mothers & fathers took part in the study. All of the families received a prognosis of 80% chance of survival for their child, except one parent that received 30% chances of survival and belonged in the high optimistic group. Interpretative Phenomenological Analysis (IPA) was chosen for the analysis as the most appropriate for this kind of research.
Results showed that all parents described their initial reaction as a big shock and emotionally draining, accompanied by feelings of hopelessness, emptiness and inadequacy. However, optimistic parents were able to accept the diagnosis quicker and adjust better to the caregiving demands than pessimistic parents. Pessimistic parents continued experiencing feelings of being out of control, helplessness, denial, guilt, anxiety and having pessimistic thoughts even in later stages of their child's cancer. Also, optimistic parents seemed to have better and more adaptive coping abilities than the pessimistic parents. For example, optimistic parents were found to use more problem-solving coping strategies, such as information seeking, finding a positive meaning in the situation, seeing the light at the end of the tunnel, re-appraising the situation as a learning process, helping other families in the same situation. On the other hand, pessimistic parents reported of being out of control and unable to cope effectively with the situation. Some of the coping strategies of the pessimistic group were avoiding talking about the situation, trying to escape from the situation, suppression of emotions, and holding general negative expectations for the future. Some characteristic quotes of the participants are presented below.
'All was a bit of a relief to be honest because that at least had a reasonable chance of recovery. I was relieved more than anything that I actually knew what it was. Because when you don't know what it is and you just see your child get more and more sick and on drips and all sorts of medication, it's quite frightening.' (O4)
'We got a lot of information from the internet initially, and then they made an appointment for us to see the doctor a day later, so it gave us time to come home and re-assess things.' (O1)
'Seeing the light at the end of the tunnel.that's what keeps me positive. I don't know how you deal with something if there was no hope, it must be horrendous. But with this, they've become very advanced with ALL. I look forward to the future. I look forward to better things and I see this as a blip. It's a tough one. But we'll just quietly work through it in our own way. I look forward to the future and seeing Andrew grow up into a man. I do. I'm excited by that. I'm excited to see how he grows up and how he turns out. Put it down to one of life's experiences.? (O5)
'You think 'Oh, my God. That's it.' You know, leukaemia she's going to die, because you don't hear positive stories about children that have got leukaemia'.(P6)
'I expected his hair to fall out so I cut it off really before it did fall out, I think really this made me realise that he has got cancer. If the hair didn't fall out it wouldn't hit me as much. And the steroids made him put a lot of weight on so he looked different. He didn't look like Mike really. I think that's what scared me as well, what the medicines doing to him, wasn't nice. (P7)
'I wish the disease to go away. But no, we get on quite well and we do the best that we can do and that's all that you can expect from anybody to do when they're in that position. But I think at the end of the day the bottom line is you didn't want this disease and you just want it gone. And that's it.' (P10)
Seligman (2002) suggests that adopting a more optimistic outlook in life, people can achieve better mental and physical health outcomes, even in times of adversities. This study confirmed the importance of optimism and pessimism in adjustment coping with psychological distress and implications related with childhood cancer and caregiving. There has been growing academic (Martin Seligman in the US; Alex Linley, Centre for Applied Positive Psychology, UK) interest in positive coaching psychology interventions which focus on building on strengths as well as addressing weaknesses. Dr Andy Turner and colleagues at Coventry University have developed HOPE + (Help Overcome Problems Effectively) which is a health and lifestyle coaching intervention. HOPE+ uses cognitive behavioural principles and techniques and is positioned within the theoretical frameworks of positive psychology (Seligman, 2002; Snyder et al. 1999) and motivational interviewing (MI) (Miller & Rollnick 2002). The HOPE+ is a brief, group intervention delivered by health and psychology professionals from Coventry University and trained community volunteers for families dealing with long-term health conditions and specifically those who experiencing elevated levels of anxiety and/or depression. The HOPE+ has the potential to assist and enhance parents perceived ability to manage various aspects of childhood cancer especially high pessimistic parents that are more susceptible to psychological distress through building pathways of positive and optimistic thinking and achieving goals (agency thinking). Also, the programme will assist optimistic parents to maintain their well-being and improve it.
Fotiadou, M., Barlow, J., Powell, L. & Langton, H. (In press). Exploring optimism id parents of children with cancer. Psycho-oncology.