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Undertaking responsibility and a new role as a relative: a qualitative focus group interview study
Malene Kaas Larsen1,2, Regner Birkelund3,4, Michael Bau Mortensen1,5
1Department of Surgery, Odense University Hospital, Odense C, Denmark.
Relatives of oesophageal cancer patients experience anxiety and take on new caregiving roles. They often feel excluded from decision-making, highlighting the need to balance patient authority with family support.
Area of Science:
- Oncology
- Psychosocial Care
- Qualitative Research
Background:
- Oesophageal cancer patients' relatives face emotional distress and uncertainty.
- Increased outpatient treatment necessitates greater family caregiving responsibilities.
- Limited research exists on relatives' experiences with oesophageal cancer illness, treatment, and decision-making.
Purpose of the Study:
- To explore the experiences of relatives of patients with oesophageal cancer.
- Investigate relatives' perspectives on illness, treatment, and decision-making processes.
Main Methods:
- Qualitative explorative research design.
- Two focus group interviews conducted with 11 relatives.
- Analysis guided by Ricoeur's theory of interpretation.
Main Results:
- Relatives experienced fear of loss, distress, and anxiety throughout the illness and treatment.
- Relatives assumed new roles, viewing treatment as a shared responsibility.
- Relatives deferred decision-making, awaiting patient and healthcare professional authority.
Conclusions:
- Relatives suppress anxiety while taking on increased caregiving roles, leading to shifting family dynamics.
- Relatives do not feel empowered in decision-making due to respect for patient autonomy.
- Balancing patient authority with recognizing relatives as active collaborators is crucial.
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