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Learning by doing: the importance of sharing experiential knowledge

In this month’s article, SPX would like to highlight a qualitative study conducted in Germany on patients suffering from colorectal cancer (Kaiser M, Adami S, Lucius-Hoene G, et al.).  This study puts the spotlight on the need for patients to learn to live with changes to their bodies from colorectal cancer (CRC) in their daily lives. 

While sources of medical information are clear, finding practical information often seems a challenge. Learning to live with these changes to the body and including them in one’s daily activities is described as a long process of learning by doing. The issue is not only to provide information but to help patients in managing their emotions.

A methodology based on patients’ own reports and experiences

This study’s originality lies in analysing patients’ own reports and experiences of the illness. Structured interviews always start with the same open question, enabling the narrative to begin: “Can you start by talking about what your life was like when you first became aware of the signs of CRC and how things went from then on? Take your time and talk about how one thing led to another”.

Following this, various topics are covered such as the point of diagnosis, treatment, obtaining information, the need for information before and after treatment, looking for information, the impact of a stoma if applicable, experiences of consultations, experiences with healthcare establishments, the decision-making processes, the fact of living with cancer and experiences with self-help groups.

A committee comprising practitioners, members of self-help groups and individual patients suffering from colorectal cancer.

A consultative committee comprising practitioners, members of self-help groups and individual patients suffering from colorectal cancer took part in the sampling strategy and initial analysis.

  • The sampling took into account differences in age, the time elapsed since the diagnosis, severity of the illness, life/family situation and geographical regions (in Germany) in order to ensure a wide range of experiences.
  • The narrative interview techniques captured the day-to-day challenges and needs of people suffering from CRC.
  • The study was based on using the principles of grounded theory, enabling information needs to be understood in the context of individual experiences of the illness.
  • The assessment of their information needs by the people interviewed may have been strongly affected by their current situation as well as by the availability of information at the time of their diagnosis.
A need for practical information to regain control of their lives following treatment

In the study, three interdependent categories of information, three needs, emerged from the analysis:

  1. The need for non-medical information for daily life;
  2. The need for information relating to the challenge of incorporating changes to the body due to this cancer in day-to-day life;
  3. Sources of non-medical information on managing daily life.

It emerged from this that obtaining relevant practical information is difficult and, to do so, sources other than medical organisations or doctors are required. Most people interviewed tried to contact other patients suffering from CRC in person or online.

Indeed, the people interviewed were concerned about the impact of the illness on their daily lives after leaving hospital. Non-medical information included the impact of changes to the body on sporting and leisure activities and sex life, as well as managing a partner’s reactions, checking bowel movements with and without a stoma, as well as living with a stoma (handling a stoma in general but also what type of clothes to wear with a stoma, what to eat, the effect of a stoma on one’s job situation or when using public transport or long distances in general, etc.).

These information needs form part of the process to enable a normal daily life after a diagnosis and disruptive treatment. Providing access to practical knowledge and information from other people who have experienced CRC may be an important resource in supporting patients. Their information needs seem particularly high immediately after and in the first weeks after leaving hospital in order to manage their illness themselves and resume social activities.

Needs dependent on each person’s individual character

The authors broadly conceptualise the context and situation in which the information needs arise:  They depend on a person’s character, the individual’s psychological characteristics such as the ability to adapt, stress and self effectiveness, social position and the trajectory of the illness, the specific care situation in which the need arises as well as when the need arises.

The context is therefore understood to include the individual and their environment – the authors thus recognising the various aspects influencing the need for information and defining it from the individual patient’s standpoint, rather than from a professional one

Hildebrandt et al suggest that people diagnosed with an experience of CRC encounter various transitions requiring emotional, social and physical changes. In this process, they need to continuously adapt to the new normal. It is in the course of this process of adaptation that the need for information by the people interviewed is reflected.

Information that can only be obtained through real-life experience

This study places an emphasis on what patients themselves think they need or want to know, showing that such needs arise for patients affected by CRC in the context of transitions, particularly when patients want to resume a normal life after a disruptive diagnosis with long-term consequences for their body.

Such practical information can only be obtained through real-life experience, experiential knowledge, complementing and differing from medical knowledge.  It is important that professionals can understand this and make full use of it.

The opinion of the SPX Virtual Contents Editorial Board:

This article once again highlights the importance for the patient and his relatives of having not only medical and care information, but also information on how he will be able to live and manage his illness on a daily basis. This is often information that health professionals know little about or know little about, since they themselves are not sick.

Being able to offer the patient who wishes to be in contact with other patients suffering from the same disease for a longer time, and who have become in a way an expert in living with the disease, can bring real added value to the patient.

In this article, it would have been interesting to question the professionals as well in order to know their vision. Are they aware of this lack of information? Are they aware of the expectations expressed by patients? What could they propose and implement ?