Experiences of living with advanced colorectal cancer from two perspectives – Inside and outside

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Abstract

Purpose

To investigate how life situation by persons with advanced colorectal cancer and their partners is affected by living with the disease and its treatment.

Method

Separate, individual interviews were made with persons with advanced colorectal cancer (n = 12) and their partners (n = 9) about how their daily lives were affected by the disease and its treatment. The verbatim transcripts were analysed using content analysis.

Results

Living with the illness of advanced colorectal cancer was experienced to be: being inside or outside the healthcare system, striving for normality and becoming conscious of life’s value and vulnerability. Living as a partner was experienced as living in an altered relation and as living in the shadow of the disease.

Conclusions

When one in a partner relation suffers from colorectal cancer, it changes life and life perspective for both partners. Partners need to be invited to and involved in the care. Cancer nursing should focus on supporting the strive for normality in daily life, as the disease and its’ treatment may last for a longer period of time. Supporting the partner may benefit the person with cancer as well, to cope along the illness trajectory.

Introduction

Being diagnosed with colorectal cancer today can mean living a long time with the disease and the treatment. Knowledge and understanding about the impact of the disease and treatment on daily life are important, if optimal nursing care is to be provided during this period.

Every year about 5000 people are diagnosed with colorectal cancer in Sweden; it is the second most common type of cancer (Socialstyrelsen, 2007). Improved methods of treatment have increased survival rates, but have also changed the course of the disease from being short and often fatal to becoming a chronic disease with the possibility of living with it for years. Primary treatment is often surgery, with complementary chemotherapy and radiotherapy. In those for whom the disease is advanced and a cure is no longer possible, chemotherapy is a major treatment option. A variety of new drugs and combinations have allowed palliative treatment to be offered that may continue for years. This means that a growing number of people are living with the disease for a longer period of time (Socialstyrelsen, 2007).

Being diagnosed with colorectal cancer affects life in different ways. A range of physical problems have been identified, such as fatigue, pain, impaired bowel and sexual dysfunction (Sprangers et al., 1993, Arndt et al., 2004). Having a colostomy can also be a consequence of the disease leading to an altered body image, higher levels of anxiety and depression, and a lower quality of life in persons with a stoma compared to those with no stoma (Sahay et al., 2000, Cotrim and Pereira, 2008). However, non-stoma patients also suffer from physical impairments such as impaired bowel and sexual function (Sprangers et al., 1995). Colorectal cancer in all stages also often results in deficits in emotional and social functioning and in quality of life of the person with the disease (Arndt et al., 2004). When the disease is in an advanced stage, there are often more severe colorectal symptoms and a lower quality of life (Simon et al., 2008). Dunn et al. (2006) stated after a systematic literature review of quality of life issues for colorectal cancer patients that there is a lack of studies using qualitative methodology and reflecting the patients’ perspective.

When a person suffers from cancer it also affects close family and friends, especially when the disease is advanced (Esbensen and Thomé, 2010). The partner is often the closest person, and he or she can play a vital role in providing important emotional and practical support (Emslie et al., 2009, Altschuler et al., 2009). Research into the effect on partners of cancer patients in general has focused mainly on psychosocial consequences or gender differences (Goldzweig et al., 2009, Emslie et al., 2009). Psychiatric morbidity with higher levels of depression and anxiety than a general population has been shown (Braun et al., 2007, Cotrim and Pereira, 2008). Northouse et al. (2000) found that partners reported significantly more emotional distress than patients.

In a previous study the authors examined health and healthcare use by the partners of cancer patients two years following the cancer diagnosis. The results showed that the partners of patients with colorectal cancer have a two-to-three times higher rate of psychiatric diagnosis. The authors also found a 25% increase in circulatory diseases, and healthcare costs were increased especially among this group of partners due to an increased use of healthcare (Sjövall et al., 2009). The authors also studied sick leave in this group, and found that a psychiatric diagnosis was the reason for sick leave in more than 40% of the cases (Sjövall et al., 2010). Thus, the results indicate that partners of persons with colon cancer might be more vulnerable or at risk of impaired health than partners of those with other cancer diagnoses, such as breast or prostate cancer.

As this is a relatively new and growing group, there is a need for more knowledge about how a person with advanced colorectal cancer and his/her partner experience their daily life and how the disease and treatment affect them. There is a particular need of qualitative studies, to increase knowledge and provide a deeper understanding of the life situation of persons with advanced colorectal cancer and their partners. In this study we interviewed, analysed and report findings from patients and partners separately in two groups. The purpose of this study was to investigate how the life situation of persons with advanced colorectal cancer and their partners is affected by living with the disease and its treatment.

Section snippets

Design

A qualitative design was chosen as the most appropriate for capturing the perspectives of persons with advanced colorectal cancer and their partners, for understanding them from their own frame of reference. In the tradition of naturalistic inquiry, reality is considered to be constructed in the perception of the individual (Lincoln and Guba, 1985). The meaning is subjective; and thus understanding other human beings has to involve their experience of the situation; hence interviewing was

Results

Three main categories emerged from the interview text of the persons with cancer. These are presented in Table 1 with their sub themes. Two main categories emerged from the interview text of the partners. These are presented in Table 2 with their sub themes.

Discussion

The importance of treatment and belonging to the system for persons with colorectal cancer was expressed as both in terms of being treated and belonging to the system and as being shut out of the system. Yost et al. (2008) showed that perceived quality of care was found to be a predictor for health-related quality of life in such aspects as physical function and wellbeing, social and family wellbeing, and also emotional wellbeing. Thus, a patient’s perception of care and feelings of belonging

Conclusion

When one person in a partner relationship suffers from advanced colorectal cancer, it changes life and life perspective for both partners. The findings from our study show that partners might be an important source of support for the person with colorectal cancer, and need to be invited to or involved in the care provided. Nursing and planning for care should focus on supporting the couples’ striving for normality in daily life, as the disease and its treatment may last for a longer period of

Conflict of interest

All the authors of this study certify that are no conflicts of interest to declare.

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