The Role of the Internet for People with Pancreatic Cancer: a Qualitative Study of an Illness with a Very Poor Prognosis
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Abstract
Background
Our goal is to explore the role of the internet for patients with pancreatic cancer to help us understand how people with a particularly life threatening illness cope handle the potential for distressing information about their illness and prognosis.
Methods
This is a qualitative study using a combination of narrative and semi-structured interviews collected by maximum variation sampling. Qualitative thematic analysis examined both what people said in the interviews (themes) and how they said it (discourse). Respondents were recruited throughout the UK from 2009 to 2010. 32 people with pancreatic cancer (almost all diagnosed between 2007 and 2010), and 8 relatives/carers of people who had recently died of pancreatic cancer were recruited.
Results
Analysis of how people talked about the internet showed that people with pancreatic cancer and their carers talked about web based health information as a routine and unremarkable part of life. Thematic analysis showed that people used the internet for a wide variety of purposes including before and after the consultation, to check the meaning of symptoms and tests, to seek second opinions and find out how others had experienced treatments. In these respects their use was similar to those reported in studies of other cancer patients. However, because people with pancreatic cancer face very limited treatment options some also used the internet to seek experimental treatments and clinical trials. The poor prognosis caused alarm to those who stumbled across on-line survival statistics (including those on sites run by voluntary organizations). Patients gave no other examples of harm, nor of damage to relationships with health professionals, from using the internet. Patients and family carers reported successful strategies for handling alarming information, including asking partners and family to filter what they found. Conclusions
In contrast to our 2004 study in which people using the internet for cancer information were aware they were in a vanguard, internet use is now routine. Clinicians may be concerned that people will find unwanted or contradictory information, yet it is probably counter-productive (and can appear patronizing) if they try to steer people away from the web. It would better to recommend websites and to be open to discuss what patients and their families have found.
Our goal is to explore the role of the internet for patients with pancreatic cancer to help us understand how people with a particularly life threatening illness cope handle the potential for distressing information about their illness and prognosis.
Methods
This is a qualitative study using a combination of narrative and semi-structured interviews collected by maximum variation sampling. Qualitative thematic analysis examined both what people said in the interviews (themes) and how they said it (discourse). Respondents were recruited throughout the UK from 2009 to 2010. 32 people with pancreatic cancer (almost all diagnosed between 2007 and 2010), and 8 relatives/carers of people who had recently died of pancreatic cancer were recruited.
Results
Analysis of how people talked about the internet showed that people with pancreatic cancer and their carers talked about web based health information as a routine and unremarkable part of life. Thematic analysis showed that people used the internet for a wide variety of purposes including before and after the consultation, to check the meaning of symptoms and tests, to seek second opinions and find out how others had experienced treatments. In these respects their use was similar to those reported in studies of other cancer patients. However, because people with pancreatic cancer face very limited treatment options some also used the internet to seek experimental treatments and clinical trials. The poor prognosis caused alarm to those who stumbled across on-line survival statistics (including those on sites run by voluntary organizations). Patients gave no other examples of harm, nor of damage to relationships with health professionals, from using the internet. Patients and family carers reported successful strategies for handling alarming information, including asking partners and family to filter what they found. Conclusions
In contrast to our 2004 study in which people using the internet for cancer information were aware they were in a vanguard, internet use is now routine. Clinicians may be concerned that people will find unwanted or contradictory information, yet it is probably counter-productive (and can appear patronizing) if they try to steer people away from the web. It would better to recommend websites and to be open to discuss what patients and their families have found.
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