The Patient Journey
Providing Support
For the Patient
A mesothelioma diagnosis brings adverse psychological reactions. Initial shock and dismay can lead to anxiety, depression, apathy, difficulty concentrating, discomfort, and social dysfunction. With all the uncertainty that comes with a diagnosis, providing emotional support can help patients to express their fears and struggles and learn new ways to cope with the difficulties they are likely to face. Involvement by a social worker or a psychologist may be helpful at this time.
Avoidance and denial are the predominant coping mechanisms adopted by patients to address feelings of psychological distress. As clinicians, it is essential we understand what is most important to the patient and how we can support them as their goals change throughout their illness.
Patients with mesothelioma are likely to experience functional decline and deterioration. Increased support by allied health and nursing is required to ensure patient safety. The needs of each patient will differ, they may include community nursing to assist with tasks such as showering, education on mobility aids and home modifications.
For the Carer and Family
Carer support runs parallel with patient care.
Caring for a loved one with mesothelioma may be one of the greatest challenges a caregiver will face in their lifetime. The high symptom burden of mesothelioma leads to significant dependence on caregivers and the poor prognosis generates uncertainty in predicting the trajectory and identifying the needs of the patient. Mesothelioma caregivers experience high levels of emotional morbidity which manifest as feelings of anger, anxiety, depression, isolation and fear of loss. They may feel overwhelmed by conflicted blame and the burden of legal claims.
It is important to check in on carers as well as the patient. Carer support is associated with improved wellbeing and confidence in their ability to provide care at the end of the patient’s life and manage after their death.1
How we Can Help
The Mesothelioma Support Service at ADDRI addresses the needs of patients with mesothelioma and supports their families. The Registered Nurse driven service utilises a wealth of knowledge and experience by drawing on personal experience, current survivorship research, cancer care networking and carer need research to provide telephone, face-to-face and group meeting support.2
The service is available to answer any questions you may have about caring for patients with mesothelioma.
References
- Harrison M, Darlison L, Gardiner C. Understanding the experiences of end of life care for patients with mesothelioma from the perspective of bereaved family caregivers in the UK: A qualitative analysis. Journal of Palliative Care. 2022;37(2):197-203.
- Lee JT, Mittal DL, Warby A, Kao S, Dhillon HM, Vardy JL. Dying of mesothelioma: A qualitative exploration of caregiver experiences. European Journal of Cancer Care, 2022;31 (5).