Restoring a sense of wellness following colorectal cancer: a grounded theory

Personal Author: Beech, Nicola 
Year: 2010.
Dissertation: Thesis (Doctorate in Clinical Practice) -- University of Surrey, 2010. 

Background

Research has often adopted a biomedical framework where recovery following treatment for colorectal cancer is measured through sequelaes of treatment.  Studies suggest a longitudinal component to symptoms of pain, insomnia and fatigue post treatment (Arndt et al 2006), potentiated by advancing age and co-morbidity (Kozachik and Bandeen-Roche 2008).  Qualitative studies illustrate how the cancer causes a loss of control and creates uncertainty (Ramfelt et al 2002).  Patients become socially isolated as persistent symptoms lead to a loss of social confidence (Rozmovits & Ziebland 2004).  Many studies have collected cross sectional data and few have considered the subjective and emotive impact of colorectal cancer over time. Much of the work has focused upon multimodal treatments for colorectal cancer and paid little attention to single treatment episodes.

Aims

This study aimed to develop a grounded theory to explain the experience of recovery following surgery for colorectal cancer. 

Methods

A longitudinal study using grounded theory was conducted with 12 individuals who had received surgery for early stage colorectal cancer.  Theoretical sampling was employed where data collection and analysis occurred simultaneously, and analysis directed further data collection to inform the emerging theory (Glaser & Strauss 1967).  Semi-structured interviews were conducted at 4 time points over one year following surgery.  Analysis was undertaken using Strauss and Corbin's framework.

Results

Participants describe their illness experience in three phases: disrupting the self; repairing the self; and restoring the self.  Disrupting the self illustrates how personal identity is threatened as body integrity is disrupted by the symptom experience and medical procedures. Hospital practices undermine the individual’s autonomy and confidence.  Following discharge, the individual begins repairing the self through actions and interactions to restore the physical body; regain a sense of confidence and autonomy; and re-establish a sense of personal identity. The final phase restoring the self is an enduring process in relation to two perspectives: a sense of wellness, or a sense of illness.  One perspective usually takes precedence but the individual can oscillate between the two, or demonstrate aspects of both simultaneously. The core category to emerge from inductive analysis is Restoring a Sense of Wellness, demonstrated through awareness and enjoyment of the emotional, spiritual and social aspects of life.  In contrast, a sense of illness pervades when the individual experiences unrelenting symptoms and a fear of disease recurrence, creating a preoccupation with illness which continues to disrupt daily life. Several participants experienced pain, altered bowel habits and fatigue for months following treatment, which then became a focus for self management, requiring time and energy to review and modify behaviours.  A successful recovery is described as one where a sense of wellness prevails and illness is relegated to the background. 

Discussion

This study adds to nursing knowledge by illustrating how the social context and cultural meanings imbued by cancer create a recovery experience beyond the immediacy of curative surgery. Frank (1995) describes a shift in the cultural context in which people now experience illness: a time he labels `postmodern`. This postmodern experience is characterized by technical expertise, demonstrated by health professionals operating within a complex organization. In this study, participants experience rapid transition through the care pathway, culminating in prompt discharge following surgery.  Within a biomedical framework, they experience an acute illness episode.  However their experiences have conceptual links to chronic illness.  They describe a disruption to their previously familiar life (Bury 1982) and threats to their sense of identity (Matheison & Stam) 1995).  Recovery is described as a duality, where individuals oscillate between a sense of wellness and a sense of illness.  Positive aspects of recovery are fostering new opportunity and self growth; appreciation of the past, present, future.  Individuals focus upon the future as a forward movement to restore a sense of purpose to life. Negative aspects can be persistent fear of disease recurrence, protracted symptoms and adverse emotions.  Symptoms are viewed as threatening and indicative of disease recurrence: `the body as a house of suspicion` (Breaden 1997).  This notion of duality has also been identified in relation to the concept of survivorship (Doyle 2008).  Infrequent follow up within the biomedical framework provides scant advice and support, and individuals can feel isolated from health professionals.  Fiscal pressures and advances in diagnostics and treatment will create shortened treatment pathways involving rapid transition between services, and prompt discharge home.  This presents a significant challenge within nursing practice to provide information and support to facilitate the individual’s recovery process.

Contribution to nursing scholarship, policy and practice

Acute illness pathways within cancer care have received little attention to date, and infrequently consider the long term emotional and subjective components of the illness experience.  This study adds to nursing scholarship by using grounded theory to consider the everyday experiences of individuals in their social world as they construct and reconstruct the reality of their illness experience.  This study is innovative because of the application of conceptual vocabulary of chronic illness to the acute illness pathway. 

This study informs policy to develop nursing roles to meet the psychosocial needs of individuals after treatment.  Protocols are required between care providers to enhance consistency and prevent ambiguity regarding information provision. Policy development must attend to knowledge acquisition for primary care professionals to support individuals at home.  Results from this study inform policy and practice to consider the needs of cancer survivors as they move between care settings, and manage much of their recovery experience independently.

This study highlights the unmet needs of individuals who receive surgery as a single treatment and experience difficulties through the recovery process. Recommendations for practice include the development of specialist nurse led follow-up where advanced assessment skills and holistic management are maximized to meet the needs of the individual. Nursing assessment could consider how the individual describes and defines a sense of wellness, and what priorities they have for their own recovery.  The strength of this study is the provision of specific recommendations to inform nursing practice to meet the needs of the expanding population of cancer survivors.


References

 

Access the full e-thesis

Beech, N (2010) Restoring a sense of wellness following colorectal cancer: a ground theory (PDF 1.51MB), Doctorate in Clinical Practice, University of Surrey

 

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