Patients' experiences of their everyday life 14 months after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy - a qualitative follow-up study.

BACKGROUND

Patients with peritoneal carcinomatosis treated with cytoreductive surgery and hyperthermic intraperitoneal chemotherapy have a long recovery process.

AIM

To describe patients' experiences of their everyday lives after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy.

METHOD

A follow-up study with a qualitative, descriptive design. Data were collected by individual, in-depth telephone interviews with 16 patients who had been treated for peritoneal carcinomatosis 14 months earlier at a university hospital in Sweden. The interviews were performed between May and June 2013 and analysed using systematic text condensation.

RESULTS

Five themes were identified: (i) finding one's new self and relating to the new situation; (ii) the disease making its presence felt through bodily complications or mental fatigue; (iii) worrying about the return of the disease and passing it on to one's children; (iv) experiencing difficulties contacting various care facilities, not having a clear plan for ongoing rehabilitation; and (v) the need for online support through the Internet and counselling for both patients and their family members.

CONCLUSIONS

Despite bodily complications, mental fatigue and worries about the return of the disease, the patient's everyday life was focused on finding his/her new self and adapting to the new circumstances. Difficulties in contacting care facilities and the lack of an ongoing medical and nursing rehabilitation plan called for a need for network support for patients and their families.

CLINICAL RELEVANCE

After advanced surgery, patients require a continuous medical and nursing rehabilitation plan, and a platform of support such as meetings via social media and Internet which would connect former patients and their families with future patients and their family members. A contact nurse with specific expertise should design an individual rehabilitation plan and continuously identify the individual needs for long-term support.