From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct.

PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct. METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis. RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: "From bystander to enlisted carer", inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient. CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.

[Case report: the practical use of the self-care deficit nursing theory for a patient with a neuroendocrine cancer of the duodenum]. / Fallstudie: Praktische Anwendung der Selbstpflegedefizit-Theorie bei einem Patienten mit neuroendokrinem Karzinom des Duodenums.

This case describes the nursing care of a 66-year-old electively admitted patient who came to hospital for the treatment of a hepatic secondary neuroendocrine duodenum cancer. A typical liver resection with duodeno-pancreatectomy and sigmaresection was performed. Complications led to more than ten re-laparatomies with resection of the stomach and oesophagus. It was necessary to perform blind occlusion of the jejunum and the disposition of an oesophagus stoma. A diabetes mellitus was caused by the total resection of the pancreas. Mister B. got a percutaneous endoscope jejunostomy but it could not be used because of a new small intestine fistula into the abdominal cavity wherefore a port was implanted. The following different conceptions of the self-care deficit theory have been used to describe and analyse the patient situation as follows: Basic conditioning factors, self-care requisites, therapeutic self-care demands, self-care competence. The future self-management capabilities consist of the following: Care of the oesophagus stoma, care of the percutaneous endoscope jejunostomy, management of the diabetes mellitus, coping with the changed self-image, coping with the restriction of movement and with the needed prophylaxis. Support was given by the transfer of knowledge to the patient. Instructions were given during realisations of new activities and development of skills. It was evaluated if the patient is capable to reflect his actions and to assess if he is able to react on deviations from the normal standards in a correct and appropriate way. After dismissal it was secured by phone call that the patient successfully manages the new self-care demands independently.