INTRODUCTION:
BPC are a major comorbidity for patients/caregivers living with a brain tumour, with prevalence rates of up to 20% for clinical depression[1] and up to 60% for personality change[2]. The objective was to find out what people living with a brain tumour want to know about BPC, so that supportive guidance can be developed.
METHOD:
The question ‘What do you want to know about BPC following a brain tumour diagnosis?” was posted on social media to a closed group (patients/caregivers). The question ran for one month (2015), generating 103 posts.
RESULTS:
Two responses resonated:
1. Why do we hurt those closest to us when anger/frustration builds up, more often than previously?
2. Why don’t we receive support/information from clinicians?
Key themes emerged:
- Threat to way of life
- Lack of behaviour control
- Impact of BPC on relationships
- Systemic problems leading to isolation
- Access to support
These resonate with the brainstrust report[3] where the two key sentiments are:
- a desire to know what to expect
- calls for better personal support, including a more equal relationship with clinicians.
CONCLUSION:
Fundamental is the theme of relationships, with a close person, with a healthcare practitioner, and with the patient themselves. When illness strikes, structural and emotional skews follow. Belief systems are challenged, roles are upended, and identities shift. The onset of a brain tumour diagnosis forcefully challenges the emotional and physical boundaries that we have spent a lifetime building.
There is an immediate need to develop resources that enable everyone to be more resilient when faced with the challenges of BPC. brainstrust is well placed to meet this agenda with its coaching led approach.
[1] Rooney AG, McNamara S, Mackinnon M, et al. J Clin Oncol 2011; 29:4307-12.
[2] Gofton TE, Graber J, Carver A. J Neurooncol 2012; 108:527-34
[3] brainstrust 2014
