A new review in JBI Manual for Evidence Synthesis evaluated the experience of hope in adult patients with advanced disease. Finding hope and positivity were helpful strategies for patient and caregiver emotional well-being.
The experience of mesothelioma is characterized by uncertainty and worry for some patients. But the same patients say they are also optimistic and hopeful.
This study did not focus on the lived experience of mesothelioma. But American mesothelioma patients are underrepresented in the medical literature. The US has a higher number of mesothelioma deaths each year than any other country.
The new study shows the experience of these patients is much like that of mesothelioma patients elsewhere in the world.
Focused on Improving Quality of Life
Mesothelioma is an extremely rare cancer with a poor prognosis. It grows faster than most other cancers. And there are fewer treatment options. These and other factors mean the experience of mesothelioma is different than that of other cancers.
“Hope is an important resource that assists patients and informal caregivers to deal with difficult and complex situations, such as living with advanced chronic disease.” Filipa Baptista from the University of Lausanne in Switzerland says.
This review looked at the experience of hope in adult patients transitioning toward end-of-life. It included studies written in English, French, and Portuguese that explored hope.
The experience of hope has been expressed as essential for life, health, and death. The research team had two questions. First, what is the experience of hope in adult patients? And second, what is the experience of hope in informal caregivers caring for adult patients?
When a patient’s symptom burden increases, the quality-of-life often decreases. Palliative care is common for patients and informal caregivers at this stage. Palliative care is an approach to improve the quality-of-life of patients and their families. It focuses on those who are experiencing difficulties related to life-threatening diseases.
The concept of hope has been widely studied in the context of palliative care. Hope is mostly viewed in terms of longer life for mesothelioma patients.
Finding hope and positivity are helpful strategies for emotional well-being. For some patients, hope was an attitude of not giving up on life. This was understood as hope for a cure or trying alternative therapies.
The authors conclude that hope “provided patients with a feeling of freedom, independence, and meaning in life, while, for informal caregivers, hope was an inner source of courage and strength.”
Previous studies show that patients benefit from discussing their experience of mesothelioma with others.
Befecadu, Filipa Baptista Peixoto, Beatrice Perrenoud, Ghislaine Behaghel, Cécile Jaques, Sophie Pautex, Maria Goreti Da Rocha Rodrigues, and Philip Joseph Larkin. “Experience of hope in adult patients with advanced chronic disease and their informal caregivers: a qualitative systematic review protocol.” JBI Evidence Synthesis 20, no. 8 (2022): 2025-2031. https://journals.lww.com/jbisrir/Fulltext/2022/08000/Experience_of_hope_in_adult_patients_with_advanced.6.aspx