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.

Postoperative health and patients' experiences of efficiency and quality of care after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy, two to six months after surgery.

PURPOSE: To study post-discharge health after Cytoreductive Surgery (CRS) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC), and to analyse patients' experiences of in-hospital efficiency and quality of care. METHODS: In-depth individual telephone interviews using an interview guide with open-ended questions were performed with 19 patients with peritoneal carcinomatosis between April and October, 2012. Data were analysed with systematic text condensation. RESULTS: Four themes were identified: 1) Coming home was an essential step in the recovery process and the focus was on getting well physically despite mental stress, uncertainty about the medical rehabilitation plan and the future. 2) Health was affected negatively by postoperative chemotherapy and its side effects. 3) Stoma - a necessary evil affecting the patient's social life. 4) Quality of care and efficiency were defined in patient-centred terms and inter-personal care from the patient's perspectives on micro level. Despite all, 32% of the patients described being fully recovered and had started to study or work two months after surgery. CONCLUSIONS: The study gives insights into some real-life experiences described by patients. The study results can be used to prepare written information, to design a postoperative rehabilitation plan for future patients with Peritoneal Carcinomatosis (PC) and to create a home-page through which patients can receive support from both health care professionals and other fellow patients.

Patients' experiences of postoperative health related to cytoreductive surgery and hyperthermic intraoperative chemotherapy.

AIMS AND OBJECTIVES: To study patients' descriptions of their health after cytoreductive surgery (CRS) before discharge. BACKGROUND: Cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (HIPEC) affects the patient's recovery. The hospital stay is long, and it is important to study how patients experience their health postoperatively. DESIGN: Qualitative descriptive design. METHODS: Between January-May 2012, individual interviews were conducted with 20 patients in a university hospital in central Sweden using a semi-structured interview guide. Data were analysed using qualitative content analysis. RESULTS: Three themes (a process, body and mind, and support) and nine categories emerged. The surgery was described as a turning point, followed by a period of hope and thankfulness. Nevertheless, patients had difficulty taking in their positive feelings because they were overwhelmed by their bodily ailments. Despite the patients' descriptions of being on an emotional roller coaster, thinking about death and an uncertain future, or being in a state somewhere between sleep and wakefulness, they described themselves as being in good mental health. Continuous individualised information and support from the surgeon and staff members were described as being important for the recovery process, and none of the patients asked for counselling before discharge. CONCLUSION: Surgery was described as a turning point followed by an uncertain future. Despite the overwhelming nature of their bodily ailments and being on an emotional roller coaster postoperatively, patients described themselves as being in good psychological health and not needing any professional counselling. Continuous individualised information from the surgeon and staff members played an important role in the recovery process. RELEVANCE TO CLINICAL PRACTICE: Both staff and future patients may benefit from the patients' experiences after CRS and HIPEC described in this study. The knowledge gained from this study could be used in designing a care plan for future patients undergoing CRS and HIPEC.