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Chemotherapy-induced peripheral neuropathy was described as background noise affecting daily life

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M A Bakitas

Dr M A Bakitas, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA; Marie.Bakitas{at}dartmouth.edu

QUESTION

How do patients with cancer describe the experience and impact of chemotherapy-induced peripheral neuropathy (CIPN) on daily life?

DESIGN

Naturalistic inquiry using an interpretive descriptive approach.

SETTING

Rural cancer centre in the US.

PARTICIPANTS

A purposeful sample of 28 patients (mean age 59 y, 71% women) with bilateral CIPN symptoms in the feet or hands (tingling, burning, numbness, “pins-and-needles,” or shock-like or painful sensations) that occurred after initiation of chemotherapy.

METHODS

Primary data collection was through individual semi-structured interviews (25–90 min), which were audiotaped and transcribed. Data were analysed using content analysis and constant comparison. Rigour and data trustworthiness were enhanced through member checks and expert consultation.

MAIN FINDINGS

Background noise was the overarching metaphor for the CIPN experience in daily life. Patients often described symptoms using comparisons with sound: “I still have trouble trying to figure out when to listen to the pain, and how to interpret the pain, and when to just tune it out.” Patients talked of CIPN as a constant drone that was distracting and unpleasant. It was generally kept in the background unless it became severe. 4 themes further explicate the CIPN experience. (1) Becoming aware. Awareness involved noticing, distinguishing CIPN from other symptoms, monitoring for changes, evaluating for threats to function, blocking intense symptoms, and informing clinicians of symptoms. Half of patients did not recall being told to expect CIPN symptoms; others found the symptoms to be unusual (ie, real or just my imagination) or confused them with other medical problems (eg, blood clots). Although clinicians monitored CIPN symptoms, they rarely asked about the general impact on patients’ lives. (2) Learning new lyrics. Patients had difficulties communicating the sensations of CIPN in ways that would be understood and addressed by clinicians. They described the sensations as “weird” and used graphic analogies (eg, “like fingernails on a chalkboard”) or gestures to mimic sensations such as electric shocks. 75% of patients experienced pain, with resulting functional difficulties, fatigue, and mood effects. (3) Functional, emotional, and social role cacophony. Many patients described the cacophony of CIPN symptoms, with global disruptions in activities of daily living, work, leisure, and family roles. Some patients felt isolated when they could not engage in social activities. CIPN symptoms were linked with emotional distress. (4) Learning to live with it. Patients reported 3 unique styles of adapting to symptoms. Some “faced the music”; they considered CIPN symptoms to be a trade-off for potential benefits of treatment, although the uncertainty of irreversible nerve damage and permanent disability was a concern. Others “adjusted the volume” of severe symptoms through self-care strategies (eg, massage), medications, or requesting a change in chemotherapy (clinicians controlled CIPN symptoms by reducing or discontinuing the neurotoxic agent in half of participants). Some patients coped by “tuning it out,” through unconscious (eg, minimising) or conscious cognitive processes (eg, intellectualisation) and planning (eg, planned rest periods during activities).

CONCLUSION

Patients with cancer described chemotherapy-induced peripheral neuropathy as “background noise,” a constant drone affecting physical, social, and emotional aspects of daily life.

ABSTRACTED FROM

Bakitas MA. Background noise: the experience of chemotherapy-induced peripheral neuropathy. Nurs Res 2007;56:323–31.

Commentary

The interpretive study by Bakitas draws on 28 participant accounts and impresses upon us the impact of CIPN. The study reveals how patients work to share their experiences of CIPN with clinicians and the remarkable work associated with managing and coping on a daily basis. Bakitas’s effective use of metaphor amplifies patient accounts and illustrates an opportunity to embrace “language as a source of evidence.”1 The metaphor of “background noise” helps us to develop insights about the effects of particular symptoms on patients.

Bakitas outlines how patients worked to describe their physical sensations in a meaningful way for clinicians despite feeling that some “encouraged them to tolerate uncomfortable CIPN symptoms.” That patients had to work to legitimise the diverse symptoms and accompanying severity is echoed by the author, noting the “difficulty communicating or describing sensations in a way that would be understood, believed, or addressed by their clinician.”

Interestingly, patients used a variety of “sounds” to translate their own experiences for clinicians using everyday knowledge, which enabled others to gain understanding from patients. Noise is something that we all are knowledgeable about, and the author’s use of the metaphor “background noise” helps us to see how coping processes for patients are identified as “facing the music,” “adjusting the volume,” and “tuning it out.” In this case, “background noise” enables a “shift in thinking,”2 and learning occurs.

The study by Bakitas underscores that “language is an important source of evidence”1 and shows how clinicians sometimes overlook what patients actually say. Bakitas challenges us to take note of what patients say because it can reveal more than we may at first think. Furthermore, use of metaphor enables learning through knowledge and understanding that we already have, which, with continued reflection, helps new or novel learning to be retained. Patients’ experiences provide a powerful and practical means to help nurses shift their way of thinking while coming to terms with what patients actually say.

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Footnotes

  • Source of funding: Department of Defence; Breast Cancer Research Program; American Cancer Society.

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